By Kaitlynn Milvert

After Britney Spears testified this past summer about her struggle to have her intrauterine device (IUD) removed while under conservatorship, many commentators posed a simple, but critical question: Can conservators (or guardians) make contraceptive decisions for those under their care?

Attempting to answer that question reveals an area of state guardianship law where guardians’ authority is particularly murky and ill-defined. Reform is needed to address the restrictions on reproductive decision-making rights that adults under guardianship currently face.

The Status Quo: Sterilization Exceptionalism

State guardianship statutes often provide few parameters for when and if a guardian can make decisions about contraception for an adult under guardianship.

Despite varying approaches across states, overall, these statutes fail to provide clear guidance to guardians or clear safeguards for the rights of adults under guardianship.

Primarily, state guardianship statutes address reproductive decision-making rights in the context of sterilization. Some states entirely bar guardians from consenting to sterilization, except in cases of serious medical necessity. Others establish procedures for guardians to petition the court to authorize sterilization.

These necessary safeguards surrounding sterilization do not go far enough to protect the rights of adults under guardianship to make decisions about other types of contraception. While other forms of contraception — such as IUDs, implants, injections, patches, and birth control pills — may be less permanent and intrusive than sterilization, they still implicate fundamental reproductive decision-making rights.

In some states, adult guardianship statutes are silent on the question of contraception. In such cases, guardians who have general medical decision-making authority are often presumed to have authority to make decisions about at least some forms of contraception — even though deciding whether to take birth control pills implicates fundamentally different rights than, for example, deciding whether to take medication for high blood pressure.

In other states, guardianship laws reference birth control in their provisions on sterilization. Such provisions require courts to consider the availability and feasibility of nonpermanent forms of contraception when ruling on petitions for sterilization. However, these provisions do not address whether or to what extent guardians themselves have the authority to make decisions about these other, nonpermanent forms of contraception.

A final approach that some state guardianship statutes take is to require court authorization for guardians to consent to at least some categories of contraceptives. For example, Wyoming requires guardians to petition the court to consent to “long-term or permanent contraception.” Even so, the statute does not define what falls within this category of long-term or permanent contraception, nor does it address guardians’ authority to make decisions about forms of contraception that fall outside this category.

These varied and often confusing approaches to contraceptive decision-making under existing guardianship statutes offer little clarity on the rights of adults under guardianship and provide few clear limits for guardians.

Toward Expanded Rights Protections

States need to provide greater affirmative safeguards for the reproductive rights of adults who are subject to guardianship, going beyond the context of sterilization to address broader contraceptive decision-making rights. Several possible options for statutory reform could clarify and meaningfully expand the rights of adults under guardianship in the realm of contraceptive decision-making.

One option would be for state guardianship statutes to allow guardians to consent to contraception only when a guardianship order expressly authorizes the guardian to do so. If the guardianship order is silent on the question of contraceptive decision-making authority, the adult under guardianship would retain full rights to make their own decisions in that area.

This possibility is consistent with existing approaches to other areas of fundamental decision-making rights in some state guardianship statutes. For example, some state statutes only authorize a guardian to make certain decisions about where an adult under guardianship will live or who they can visit with if the guardianship order expressly includes such an authorization. This statutory approach could translate directly into the context of contraceptive decision-making.

Another, related possibility grows out of the recommendations of the recent Fourth National Guardianship Summit — a nationwide convening of judges, lawyers, guardians, advocates, and other stakeholders in the adult guardianship system. One of the Summit’s landmark recommendations was that “States should eliminate plenary guardianship, allowing people to retain the maximum of rights, and if guardianship is imposed, require tailored guardianship orders in all cases.”

Under this recommendation, courts could not give guardians general, broad authority over all areas of decision-making in the way that courts often do currently by granting “full” or “plenary” guardianships. Instead, courts would have to provide more individualized guardianship orders that spell out the specific scope of a guardian’s authority. Requiring these types of limited guardianship orders in all cases would provide an important tool for preventing unnecessary intrusions on individuals’ contraceptive decision-making rights.

To be clear, statutory changes alone are in no way enough to address the significant restrictions on reproductive decision-making rights that adults under guardianship routinely face. Other, more holistic efforts — such as expanding access to sex education, improving the quality of reproductive healthcare for adults with disabilities, and supporting recognition of less restrictive alternatives to guardianship — are equally essential in addressing such restrictions.

However, statutory shifts could go a long way in providing greater clarity for guardians and healthcare providers alike in the area of contraceptive decision-making rights for adults under guardianship. More importantly, such changes would provide improved safeguards for the rights of adults with disabilities to make fundamental reproductive decisions — independent of their guardianship status.

The post How Adult Guardianship Law Fails to Protect Contraceptive Decision-Making Rights appeared first on Bill of Health.

By Joel Michael Reynolds and Rosemarie Garland-Thomson

During the COVID-19 crisis, many nation-states did not consult or substantively take into consideration treaties protecting the rights of people with disabilities when developing their pandemic responses.

For example, the United Nations’ 2008 Convention on the Rights of Persons with Disabilities (UNCRPD) is an international human rights treaty intended to protect the rights and dignity of all persons with disabilities. It articulates principles of non-discrimination (see especially Articles 2, 3, and 5) and broader obligations upon specific parties, such as states parties, which are obligated to protect the rights and freedoms of people with disabilities (see Article 4, et al.).

The failures to uphold these principles and obligations during the COVID-19 pandemic were met with a swift response. The Office of the United Nations High Commissioner for Human Rights (OHCHR) produced guidelines on COVID-19 and the rights of persons with disabilities in April of 2020, as well as a policy brief in May of that year.

This commentary outlines three of the more important considerations for international pandemic lawmaking — both for specific instruments and wider deliberation — with respect to people with disabilities in general and the United Nations’ 2008 Convention on the Rights of Persons with Disabilities (UNCRPD) in particular.

Three Core Takeaways from the UNCRPD for Pandemic Preparedness and Response

1. Triage or other sorts of critical care policies that specify differential treatment on the basis of disability alone are in conflict with the UNCRPD.

Article 4.1.E states that states parties should “take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise” (see also 5.2 and 11).

Policies could be developed that allow differential treatment options depending upon specific medical information. For example, if there is one ventilator left and two patients are indicated for ventilator use, specific information about the likelihood of response to intubation could, arguably, be used to determine which patient gets it.

Contrast this particularized approach to one that instead stipulates “those with pre-existing respiratory impairments should be de-prioritized during crisis standards of care.” On our interpretation of the UNCRPD, the latter is unjust and discriminatory while the former is, at least arguably, just.

Further, judgments based upon long-term predictions are not appropriate. This is in line with the OHCHR’s guidance on the subject matter, which advises against “triage guidelines for allocation of scarce resources with exclusion criteria based on certain types of impairment, having high support needs for daily living, ‘frailty’, chances of ‘therapeutic success’, as well assumptions on ‘life-years’ left should they survive.

Solomon et al. expand on this, arguing that “the ability to predict long-term survival is poor and therefore susceptible to bias. Furthermore, many disadvantaged populations have reduced life expectancy, and triage protocols should not exacerbate health inequities.” Given the evidence suggesting that quality-of-life metrics are biased and negatively impact equity of care for disabled people, they agree that “scoring systems using quality-adjusted or disability-adjusted life-years should not be used.” They do suggest, however, that “near-term survivability…can be assessed independently from disability,” where “near-term” picks out 12 months or less from discharge.

2. In the spirit of Article 4.1.H, official information concerning the pandemic must be made as accessible as possible.

This means including closed captioning as well as sign-language interpreters for all pandemic-related communications; it also means ensuring the availability of high-speed internet to all people as well as accessibly designed web interfaces (usable for those with screen readers, etc.) There are many resources available to help various bodies increase the accessibility of their communication strategies.

3. People with disabilities should be included in the development and review of pandemic preparedness and response at all levels and with respect to all relevant institutions.

Article 29.B specifies that state parties shall “promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs.” This includes any potential negotiations of new legal instruments relating to pandemics.

For more detailed analyses and suggestions, including those that take into account broader economic concerns, we recommend the following pieces:

• United Nations, “Policy Brief: A Disability-Inclusive Response to COVID-19”
• United Nations OHCHR, “Covid-19 and the Rights of Persons with Disabilities: Guidance”
• Banks et al., “Disability-Inclusive Responses to COVID-19: Lessons from Research on Social Protection in Low- and Middle-Income Countries”
• Guidry-Grimes et al., “Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care”
• Solomon et al., “Covid-19 Crisis Triage—Optimizing Health Outcomes and Disability Rights”

From Civil Rights to Human Rights

It is worth noting that while the United States of America signed the UNCRPD in July 2009 during the presidency of Barack Obama, it has not been ratified by the United States Senate. The Leadership Conference on Civil and Human Rights notes, “After four years [2016-2020] of an administration that has attacked disability rights through its policies and appointees…the United States must make its position on disability rights clear. Ratifying CRPD represents an opportunity to take bipartisan action and unite with the rest of the world in advancing the civil and human rights of people with disabilities everywhere…Disability rights are civil and human rights. Now, more than a decade after the United States signed the treaty, it’s time to finally make a global commitment to protecting disability rights by ratifying it.”

While civil rights/anti-discrimination laws like the Americans with Disabilities Act in the U.S. or the Disability Discrimination Act in the U.K. are certainly steps in the right direction, they are insufficient to forward disability justice and to enforce human rights that are inviolable regardless of ability status. National responses are limited. We encourage the development, implementation, and enforcement of international laws designed to uphold disability rights and realize disability justice across borders. Whether during times of crisis or times of calm, defending disability rights is essential to all human rights efforts at local, national, and international levels.

Joel Michael Reynolds is Assistant Professor of Philosophy and Disability Studies at Georgetown University, Senior Advisor at The Hastings Center, and Senior Research Scholar at The Kennedy Institute of Ethics.

Rosemarie Garland-Thomson is Professor Emerita of English and Bioethics at Emory University and Senior Advisor and Fellow at The Hastings Center.

The post The Import of the UNCRPD and Disability Justice for Pandemic Preparedness and Response appeared first on Bill of Health.

By Lauren Breslow

On October 5, 2021, a 20-year-old Native American woman, Brittney Poolaw, was convicted by an Oklahoma jury of manslaughter for the death of her 17-week-old, non-viable fetus.

Her conviction stands as a modern recapitulation of the historical violations that women, especially Black and Brown women, have endured regarding their fertility.

Ms. Poolaw was only 19 years old when she miscarried and sought health care at Comanche County Memorial Hospital.  She shared with medical personnel crucial information about her medical condition, namely that she had taken illegal substances, including methamphetamine.

The state — via the prosecutor’s office — used Ms. Poolaw’s trust of the medical establishment against her.  In seeking health care, Ms. Poolaw landed in Oklahoma District Attorney General Craig Ladd’s crossfire.  DA Ladd announced in 2017 that his office would prosecute pregnant women who used drugs for neglect and abuse of their unborn fetus.  What is particularly striking about the DA’s decision to prosecute Ms. Poolaw is that she miscarried at 17 weeks (the fetus was actually dated between 15-17 weeks), at least three weeks prior to when Oklahoma begins to restrict abortion access.

In other words, Ms. Poolaw could not have been prosecuted for aborting her fetus; yet she sat in jail for one and half years waiting trial for killing her fetus and is now subject to a four-year sentence for murder in the first degree.

Ms. Poolaw’s prosecution is yet another instance of a long, unfortunate tradition in American history in which the state claims a controlling interest in what happens between a fertile woman and her physician.

In the first half of the 1900s, the medical establishment adopted a eugenics policy, which was explicitly encouraged by state statute. The Supreme Court bolstered this campaign with its ruling in Buck v. Bell, a 1927 decision that has yet to be explicitly overturned.  In the decision, the Court upheld a Virginia state statute permitting doctors to sterilize individuals deemed to be feeble-minded, especially if such feeble-mindedness was deemed hereditary. This paved the way for an onslaught of non-consensual sterilizations of both men and women.

While the Court took pains to highlight Virginia’s careful due process protections for those recommended for sterilization, historians have since shown that Carrie Buck, the plaintiff in the case, received no such fair hearing.  To the contrary, her community had conspired against her — she had been raped at age 17 and institutionalized by her rapist’s family to hide his misdeed.  And evidence shows that she was not feeble-minded; nor were her family members that were marshalled out to prove the heritability of her trumped-up condition.

Ms. Buck had the deep misfortune to have this conspiracy unfold as Virginia’s eugenic fervor — and the doctors leading Virginia’s eugenics movement — were looking for a test case.  This matter of happenstance, of being caught in the wrong place at the wrong time, echoes almost one hundred years later in Ms. Poolaw’s case, with Ms. Poolaw swept up into Oklahoma’s law-and-order fervor to stop drug use during pregnancy.

The Buck ruling unleased a eugenic torrent on women’s fertility, with over 30 American states adopting sterilization statutes, and by the 1950s, the majority of people subject to sterilization were women and women of color.  The famed civil rights activist Fannie Lou Hamer coined the term Mississippi Appendectomy to encapsulate what happened to her and so many other Black women, especially in Southern States.  Ms. Hamer went to her doctor for treatment of uterine tumor, and without her consent, her doctor sterilized her during her uterine surgery.

This happened thousands of times over, with estimates of over 60,000 sterilizations in the United States.  Women were tricked, coaxed, and threatened into receiving sterilizations, with one infamous case upholding a doctor’s policy to threaten women’s eligibility for benefits unless they agreed to be sterilized.  Native American women were particularly targeted by sterilization campaigns, with a U.S. Government audit acknowledging in 1976 that thousands of Native American women were sterilized — so many that some researchers estimate almost one quarter of Native American women of childbearing age were sterilized.  Women in Puerto Rico were also disproportionately subject to eugenic sterilization campaigns, with a third of Puerto Rican women of child-bearing age sterilized between the 1930s and the 1970s. California also holds a grotesque history of sterilizing thousands, especially immigrant women, against their will and without their knowledge. In California, female prisoners were sterilized without consent through 2013.

Over the 1970s, most states repealed their sterilization laws, with Oregon being the last state to commit a forced sterilization in 1981 and repeal its sterilization law in 1983.  While Oregon and other states have issued apologies, only California, North Carolina, and Virginia have enacted reparation statutes.  Not exactly a national reckoning for what happened to so many women. And even today, forced sterilizations are reportedly still occurring, for example, among immigrant women at a U.S. Immigration and Customs Enforcement detention center in Georgia.

This history of controlling women’s fertility sheds a frightening pallor over the disparities in pregnant women’s health, with the United States ranking last in maternal mortality across industrialized nations.  The U.S. Centers for Disease Control and Prevention (CDC) report that Non-Hispanic Black women die at a rate of 41.7 deaths per 100,000 live births compared to 13.4 deaths per 100,000 non-Hispanic White women.  Native Americans face 28.3 deaths per 100,000 live births. Infant mortality rates are similarly inequitable.

These disparities seem to birth themselves, figuratively, from a long history of abuse and mistrust in the health care that women and women of color receive.  And this history impacts the choices that women make now about their care, with the CDC reporting that pregnant women are significantly less likely than the rest of the population to accept a COVID-19 vaccination, despite growing evidence that COVID-19 is dangerous for pregnant women.  Black pregnant women are among the lowest adopters of the COVID-19 vaccination.

And, to this day, courts, legislatures, and prosecutors continue to perpetuate abuse and mistrust among pregnant people by interfering in their reproductive decision-making.

This year, the Sixth Circuit decided that it was not an undue burden for women to conceal their thoughts and intentions regarding potential abortions from their doctors. In Preterm-Cleveland v. McCloud, the Circuit considered Ohio’s prohibition of abortions where the rationale is to terminate a Down Syndrome pregnancy.  The Court reasoned that women seeking abortions could conceal their rationale from health care providers to overcome the restriction and obtain abortions.  The Court asks providers and their patients, therefore, to undertake a game of smoke and mirrors, as most health care providers will know the likely reason for the abortion request, given that it will come on the heels of a genetic screening and consult.

Texas has taken further aim at women’s reproductive autonomy with its new abortion restriction law, S.B. 8.  This law empowers lay citizens to sue providers who offer women abortions after six weeks of pregnancy (which may be as early as two weeks after a missed menstrual cycle). Now every person is in the room with a pregnant woman and her doctor.

These interlopers have no place in the exam room — not in Ohio, not in Texas, not in Virginia, not in Oklahoma, not in any U.S. state or territory. What was not appropriate for Carrie Buck in 1927 remains inappropriate for Brittney Poolaw in 2021. A woman should have control over her fertility and reproductive choices. And she should have the protections — from an otherwise controlling state — that she needs to communicate honestly with her physicians.

If we respect and appreciate the racism and sexism that has defined maternal health and fertility, it is easier to see why states need to protect women and women of color, and not prosecute them over their fertility choices. Ms. Poolaw’s choice to share pertinent medical data with her providers in the midst of her miscarriage should have resulted in medical treatment; her case should have been just that — medical, not criminal.

The post Brittney Poolaw and the Long Tradition of State-Sponsored Control of Women and Their Fertility appeared first on Bill of Health.

By Martín Hevia and Ximena Benavides

Acknowledging what went wrong during the COVID-19 pandemic is crucial to any pandemic lawmaking efforts. Chief among these concerns should be the centrality of human rights to global health security.

Health systems that lack universality and inclusivity will always fall short on disease surveillance, detection, and response during health emergencies, at the risk of not reaching all populations. The risk of exclusion exceeds national borders. Regional and global health governance favor the ‘competition of a few’ over (formal) solidarity, which explains why some of the small number of international collaborative initiatives aiming to reach the poorest countries during the pandemic are falling short.

Nonetheless, human rights remain at the periphery of the global health security conversation and the pandemic treaty debate.

Following the call of dozens of world leaders for a new treaty or another legally binding instrument to strengthen pandemic preparedness and response, the World Health Assembly will convene a special session in November 2021 to consider a new binding agreement that could address key failings in the COVID-19 response, including the insufficient international cooperation to implement the International Health Regulations’ (2005) public health capacities. Such an initiative should also serve as the long-awaited international policy-making window to address our health systems’ deep structural problems.

How can a pandemic treaty positively transform our health systems? In this contribution, we outline four core strategies.

1. First and foremost, we ought to relocate the right to the highest attainable standard of health to the center of the post-COVID-19 global health architecture.

Even before the current pandemic, a group of civil society organizations, global health leaders, and academics advocated for a Framework Convention on Global Health (FCGH) that can strengthen our health systems and address the day-to-day indignities and inequities that national and global health systems exhibit. In fact, in 2016, Ban Ki-Moon, then UN General Secretary, called for action by “encourag[ing] the international community to consider and recognize the value of a comprehensive framework convention on global health.”

We must advance the right-to-health principles of equitable access, accountability, and participation through global and national programs of action with health equity incentives and action-oriented roadmaps that factor in the SDH. The goal is to fortify public trust that can ensure broad compliance with public-health measures, for example, to reduce vaccination hesitancy. This can be achieved, for instance, by including the appropriate mechanisms for the community to set priorities and participate in decision-making processes for public health policies. In turn, accountability would establish the duty of disclosure of contracts, budgets, and criteria for the allocation of health resources.

2. A pandemic instrument should contribute to health, financial, and human capacity through a national and international funding framework that can ensure sufficient and efficient spending and strategies to overcome implementation shortcomings.

3. Following the example of international, legally binding treaties such as the Paris Agreement, a pandemic instrument should set coordinated, concrete commitments, and impact assessments to help countries improve their health systems and adjust national policies that affect the health of their own populations and beyond borders, particularly of those most vulnerable and marginalized.

4. Lastly, this instrument should promote the right to health in the private sector by establishing standards that ensure that companies do not undermine the right to health nationally or abroad; that is, to enforce the UN Guiding Principles on Business and Human Rights with respect to the right to health.

Why do we need a treaty or another binding legal instrument to channel such transformations? To be clear, an international legally binding instrument is not indispensable in order for health stakeholders to collaborate and prepare for future pandemics. Nations can cooperate with each other and make key joint decisions as they have in the past to overcome global crises.

However, this has clearly not been the way most countries have conducted themselves with respect to procurement of vaccines, medical protective equipment, and COVID-19 tests, as well as with respect to sharing intellectual property on vaccine technology.

As the pandemic continues to reshape the politics and economies of many countries and challenges multilateralism, a more critical approach to health governance and speedy, scaled response from all political leaders is needed. In this context, it is clear an international lawmaking effort is justified.

Further, at a time when nationalist populism threatens global cooperation, international lawmaking efforts promise to reinforce the World Health Organization’s independent monitoring power and unify a broader and actively involved supportive constituency — including experienced organizations and advocacy groups who are trusted and have a track record of success in promoting health worldwide. A recent good precedent is the Framework Convention on Tobacco Control, where the WHO exercised its constitutional treaty-making power by consensus.

We are witnessing an extraordinary moment in history that urges leaders, international health organizations, global health advocates, the private sector, and the civil society to have a truthful conversation on how to transform our health systems through a health justice framework. The special session of the WHA is an opportunity to empower and engage with a larger constituency to lead deep reforms in global health governance. By agreeing on a set of standards on the right to health, we can initiate the process of transforming the nature of our health systems while reinvigorating global health security, institutions, and governance.

Martín Hevia is the Dean of the Universidad Torcuato di Tella Law School, President of the Ibero-American Association of Law Schools, and Past-Founding Chair of the Framework Convention on Global Health Alliance.

Ximena Benavides is a Yale Institute for Global Health (YIGH) Fellow, Yale Fox International Fellow, and a member of the Executive Committee of the Framework Convention on Global Health Alliance.

The post Why We Need a Transformative Right-to-Health Pandemic Treaty Now appeared first on Bill of Health.

By Cathy Zhang

In February, the Sixth Circuit Court of Appeals issued a one-sentence order allowing Tennessee’s “reason ban” abortion restrictions to go into effect. The restrictions make it a felony for a provider (or any other person) to perform an abortion if the provider “knows” the patient is seeking an abortion on account of the fetus’s sex, race, or probable diagnosis of Down syndrome.

The court below had previously enjoined the Tennessee law, which also includes a pre-viability abortion ban. This order leaves the previability ban in place while lifting the injunction on the reason bans; the reason bans will remain in effect until the Supreme Court makes a further ruling on abortion in Dobbs. In her dissent, Circuit Judge Karen Nelson Moore charged that the court’s order “subvert[s] the normal judicial process” and reflects a growing tendency of federal courts “to delay the adjudication of laws that significantly impair constitutional rights.”

Numerous health organizations, racial justice groups, and disability advocates alike have warned against the harms that the reason bans will inflict on people of color and disabled persons. Statements from these groups, along with 19 states and the District of Columbia, a host of constitutional law scholars, and other amici make clear that the law’s purported concern for marginalized groups belies an effort to restrict abortion access at the expense of pregnant people’s health and constitutional rights.

The Three Reasons

As a native Tennessean, I have been following the trajectory of the reason bans since the law’s passage in July of 2020. Living in Nashville in the months following the passage (and immediate injunction) of the reason bans, I noticed that in local news coverage, advocates of the bans tended to emphasize the Down syndrome and race elements of the ban over the sex element.

The political emphasis on the former two elements makes intuitive sense. The Down syndrome reason ban reflects a growing trend in genetic anomaly-related abortion legislation that, in the words of disability advocate amici, “exploits the very community it claims to protect” and deprives families of the freedom to make an affirmative decision to give birth to a child with a disability.

The attention to race reflects a recent revival in legal discourse around race and eugenics, marked by a 2019 concurrence in which Justice Clarence Thomas charged that “[e]nshrining a constitutional right to an abortion based solely on the race, sex, or disability… would constitutionalize the views of the 20th-century eugenics movement.”

Interestingly, however, across the U.S., the legislation itself reflects a different focus. When I recently began looking into reason bans in other states, I was surprised to find that some did not include all three reasons of sex, race, or a genetic anomaly. Even more unexpected was the relative distribution of these bans: the most widely enacted reason ban across states is a prohibition against abortions on account of sex, followed by genetic anomaly, with race selection banned in the fewest states.

Underpinning the sex reason bans across the country is the rationale that without these bans, cultural biases will spur sex-selective abortions that lead to population imbalances like those China and India, where there are tens of millions more men than women.

Anti-Asian Stereotyping

References to alleged “gendercide” in China and Asia have been prevalent in the passage of sex-based reason bans across the country. Researchers from the Harvard Kennedy School have pointed out that the association between growing AAPI populations in certain states and those states introducing sex-based reason bans reflects systemic anti-immigration policies. That sentiment has been exhibited in comments by state legislators, such as one statement by an Arizona senator that “cultures are bringing their traditions to America that really defy the values of America, including cultures that value males over females.”

Anti-Asian stereotypes were not only pushed during the passage of the Tennessee ban, but also codified in the Tennessee Code. The reason ban cites to § 39-15-214, which warns of “[w]idespread sex-selective abortions in Asia” and uncited data that “suggests that sex-selective abortions of girls are common among certain populations in the United States.”

This rationale perpetuates harmful stereotypes against Asian patients and gives rise to the concern that Asian individuals seeking an abortion in Tennessee will be denied care. This is not merely a speculative concern about individual discrimination, but a recognition of the fact that state-imposed barriers to care are disproportionately burdensome for Asian patients due to economic, immigration, and linguistic challenges. The National Asian Pacific Women’s Forum states that the stereotyping in Tennessee’s ban, in combination with systemic inequities, “will almost certainly result in AAPI women being denied the same abortion care that will still be available to non-AAPI women.”

Considerations from China 

Reason bans undoubtedly limit reproductive autonomy and pose many harms to pregnant people. For these reasons, they’re also likely to exacerbate the concerns they set out to address.

Even under a good-faith (if not empirically supported) acceptance that sex-based reason bans are designed to prevent population imbalances seen in places like China, Tennessee’s reason ban is at best a poorly contextualized policy misstep. A basic understanding of China’s legal history and current policy challenges makes clear that government coercion in family planning is not a tenable solution to gender imbalances, but rather a fundamental cause of them.

China’s one-child policy is widely — and correctly — understood to have been the primary driver of the gender imbalance in China. The role of abortion in this, however, is mischaracterized by the legislators behind reason bans in states like Tennessee.

Sex selection took many forms, including infanticide and abandonment. When my cousin was born in rural China in the early 80’s, her parents initially planned to pass her off as the daughter of another couple so that they could try again for a son. To be sure, there was a cultural pressure to have a son who could carry the family name, but the pressure to raise a son was as much economic. A son could help on the family farm, had more earning potential, and did not require a dowry. Increased access to abortion care may have changed the ways in which sex selection took place, but was far from the originator of the phenomenon.

Concerns about the long-term economic implications of a child’s gender persist today, though in very different forms. The one-child policy distorted both gender and age distributions, resulting in a caregiving shortage for China’s aging population, which has traditionally relied on filial care. This, in combination with the expectation that daughters are more likely than sons to be reliable caregivers, has placed new value on daughters from the one-child generation.

During the summer of 2015, not long before China ended its one-child policy, I lived with a relative and her five-year-old daughter in Chengdu. During that period, she shared with me why even in the absence of the one-child policy, she and many other parents her age would choose not to have a second child. The cost of raising a child had steeply increased as parents became expected to invest all their resources into one child, so to be among the first families to have a second child might put their first child at a competitive disadvantage compared to their only-child peers. She and her husband also expressed comfort in the fact that their only child was a girl, since parents of daughters could reasonably expect to be cared for in old age.

At the heart of these instincts is a fear among parents that their children will not have the resources to be able to take care of their own families in the future. State intrusions and restrictions around pregnancy only exacerbate this problem by creating uncertainty in family planning. This is as true for Tennessee’s reason ban as it is for any law that strips pregnant individuals of their family planning autonomy.

The post Tennessee on My Mind: Reflections on the Reinstated Abortion ‘Reason Bans’ appeared first on Bill of Health.

By Chloe Reichel

On May 2, 2022, Politico published a leaked draft of the majority opinion in Dobbs v. Jackson Women’s Health Organization, which showed the Supreme Court’s intent to overturn the right to abortion as decided in Roe v. Wade.

In response to the leak, the Petrie-Flom Center hosted a discussion with legal historian and Daniel P.S. Paul Visiting Professor of Constitutional Law Mary Ziegler and Petrie-Flom Center Faculty Director, James A. Attwood and Leslie Williams Professor of Law, and Deputy Dean I. Glenn Cohen.

Together, Cohen and Ziegler explained the background of the case, the contents of the draft opinion, and its potential implications not just for abortion access, but also for other constitutionally-protected rights, and for access to reproductive technologies, such as in-vitro fertilization.

The highlights of the conversation have been edited and condensed below.

The Case and The Leak

What is the case, Dobbs v. Jackson Women’s Health Organization, about?

I. Glenn Cohen: The narrow question asked of the court was whether the 15-week [abortion] ban of the state [of Mississippi] was constitutional or not.

We began with a case that really focused on whether viability was the correct line or not.

With the passing of Justice Ginsburg and a replacement on the Court, things have shifted, and even since the oral argument, I would say shifted even more to this question of the wholesale overruling.

What does the draft opinion actually say?  

Mary Ziegler: The draft opinion holds that Roe v. Wade was not just wrong, but “egregiously wrong,” in the language of the opinion. Wrong the day it was decided, and wrong today.

Its reasoning draws heavily on Washington vs. Glucksberg. So it asks, was there a right to abortion is deeply rooted in the nation’s history and tradition, and concludes that that right is not deeply rooted.  The draft suggests that from the very early common law onward, abortion was viewed if not as a crime throughout pregnancy, then certainly with disfavor — that there was no belief in the 19th century at the time the 14th Amendment was ratified that there was a right to abortion, and that indeed most states at the time were criminalizing abortion throughout pregnancy.

The draft also looks at kind of conventional stare decisis analysis — in addition to leaning pretty hard on the idea that Roe was egregiously wrong, that its reasoning was uniquely unpersuasive — the draft suggests that Roe and Planned Parenthood vs. Casey have become unworkable. As evidence of this, the draft looks at the fact that the Court has tinkered with Roe and Casey, and also that the undue burden test, which Casey laid out, has uncertain contours that the Court’s Justices don’t necessarily even at the moment agree on what it entails, and that it has generated inconsistent results in the lower courts.

How did this draft opinion come to be?

Cohen: While the opinion is in some ways surprising, it is kind of a natural apogee of the directions that we were going in, in a number of ways and this is a case where I don’t think, oh, if we only made this argument, or if we only had written this, it would have made any difference. This result was fairly baked in.

Ziegler: If you’ve studied the history of this issue, it becomes quite clear that people who are opposed to abortion don’t think Roe was wrong primarily because its reasoning was unconvincing. They think that Roe was wrong because of the outcome it reached.

I think in part you see that reflected in the draft, in the sense that the draft disposes of the equal protection argument. I think that the organizing that’s around this issue has given us a Court that thinks there is no abortion right, full stop, on any grounds, including ones not originally dealt with in the Roe opinion.

But many of the recently confirmed Supreme Court justices had testified in their Senate hearings that Roe was settled law. The leaked draft suggests they will soon sign onto a decision to overturn Roe. Would that be perjury?

Ziegler: I think there’s a long now relatively long-standing tradition of not answering the question and so the kinds of sound bites you’ll see the justices give essentially are things about you know settled law and Roe is a precedent of the court that say absolutely nothing about what they’re going to do and of course that’s by design. I don’t know if anyone believed at the time that those were solid commitments not to reverse Roe.

I think it’s more an indictment of how confirmation processes have changed, rather than of the individual justices.

Why do you think the draft was leaked?

Ziegler: My guess is because people are watching. There’s a feeling that that overruling Roe is different, is consequential, and the leaker was probably trying to influence that outcome one way or another.

Cohen: I think there’s been a strategic use of the conversation, in political circles, of deflecting attention to the leak and the mystery of the leak, and away from the content of the opinion and its implications.

Looking Ahead

What are the prospects of a federal abortion ban or fetal personhood bill?

Cohen: This will be a next frontier for the anti-abortion movement, it’s probably a long frontier, the same way getting Roe overturned was a long frontier. That’s not a lot of solace to people, but it probably is a project that is going to require many years.

As some states move to criminalize abortion and others continue to provide safe and legal abortion, how will these conflicting state laws interact?

Ziegler: The constitutional questions that extraterritorial application of criminal law would raise are really unsettled, vis-à-vis the right to travel or the dormant commerce clause, even the choice of law questions are extremely unsettled, but it seems that states are interested in this and it’s not surprising why. There’s a real awareness in conservative states that unless you have extraterritorial application of laws, the laws will have a gaping loophole, and in many instances the abortion rate will not go down, even in a post-Roe United States. So I think that’s why we’re seeing this, but I think it’s likely to usher in a probably even more chaotic era legally than the one we’ve come to know.

Cohen: And if I can just add one more note to that, which is from a reproductive justice perspective, it’s really important to recognize that while travel for some women is an option and a possibility for many women it’s either not a very good option or it’s not an option at all — if you’re a person with a disability, if you’re a person with a job or have other child care needs and can’t get away, if you’re in a relationship where you fear domestic violence if you leave for a period of time and this is discovered — just putting aside just how far some women will need to travel and how expensive it will be. I don’t want anybody to think that we’re suggesting that even if this is permitted that this is an easy solution.

If the draft opinion becomes law, how might it affect medication abortion?

Cohen:  Many of the most interesting questions are preemption — so, the extent to which FDA’s approach to the drugs in question, mifepristone, misoprostol — whether that plus the REMS that’s in place as a matter of FDA law on at least one of the drugs, ends up being preemptive or not about state attempts to restrict prescribing or the availability of the drugs.

Ziegler: The other interesting question about the intersection between medication abortion, preemption, and generally questions of travel is the extent to which that changes the dynamics of whom states set out to punish.

We’ve seen thus far that, with the possible exception of Louisiana, states have been pretty much in lockstep in saying they seek to only punish medical professionals, and potentially aiders and abettors, which is a kind of broad category that could include theoretically almost anybody but the pregnant person. But I think that the availability of medication abortion and possible steps involving FDA preemption will put more pressure on states to considering consider punishing patients.

How might it affect the legality of reproductive technology, such as in-vitro fertilization?

Cohen: I think the question to ask is not so much the constitutional question — did you have a right yesterday that no longer exists – but whether states are going to be emboldened and feel pressured to make inroads on IVF and on embryo destruction in particular after this opinion. And I think that’s a hard political question.

What’s more likely to happen, in my opinion, is not that we’ll see legislation directly targeting IVF, but rather poorly drafted legislation side swiping IVF and questions of interpretation of those statutes. The zeal to restrict abortion will be framed in a way that sideswipes reproductive technologies, and then there’ll be a question — for me, more of a political question — about whether constituencies in favor of those technologies are able to get the language changed.

If the right to abortion is overturned, what might this mean for other constitutionally-protected rights, such as marriage equality?

Ziegler: There’s sort of a disclaimer in the draft, where essentially Justice Alito says, if you’re worried about other substantive due process opinions on marriage equality, or on birth control, or on same-sex intimacy, don’t worry about it because abortion is sui generis. Roe and Casey involved the taking of a fetal life — fetal life is valuable; this is different; we’re not revisiting any of those precedents. A variety of commentators have weighed in on whether that disclaimer is to be believed or not, and I think there are reasons to be skeptical of the promises made in the draft, but it’s also worth put putting out there that it’s a major part of the draft — that this is supposed to be a draft about Roe and Casey and not potentially putting out its tentacles into the world.

What legal strategies remain available for securing access to abortion?

Ziegler: There are lots of ingredients here for an effective counter movement to reverse Dobbs, if you’re looking in the long enough term. Obviously I think that’s a question of decades, not of months or years, so I think federal constitutional law is something that will be changeable only if people are playing the long game — and if they’re playing the long game not just in terms of constitutional theory, but in terms of social movement organizing, political lobbying, the restoration of something that looks like a genuine grassroots pro-choice movement, which I think has been underdeveloped in recent decades, and that’s true even of a kind of frayed relationship between the movements for reproductive justice and a right to choose.

I think the action at the moment is in the states, including disputes over state constitutions. We’re seeing that play out already, certainly in Michigan.

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By James R. Jolin

POLITICO’s leak of Supreme Court Justice Samuel Alito’s draft majority opinion in Dobbs v. Jackson Women’s Health Organization suggests that U.S. abortion rights are on the verge of a fundamental shift.

If the official decision, expected this month, hews closely to the draft, the constitutional right to abortion affirmed in Roe v. Wade (1973), Planned Parenthood v. Casey (1992), and other seminal Supreme Court rulings will disappear.

This brief history of abortion rights and jurisprudence in the United States aims to clarify just what is at stake in this case.

The story of Constitutional abortion rights begins, most precisely, almost a decade prior to Roe ruling — and with the issue of contraception, not abortion. In 1965, the Court heard argument and decided on Griswold v. Connecticut. At issue in Griswold were two, centuries-old Connecticut statutes — one punishing “any person who uses any drug, medicinal article or instrument for the purpose of preventing conception” and a second sanctioning any individual who “assists, abets, counsels, causes, hires or commands another” to seek an abortion.

In invalidating both Connecticut laws, the Court identified a central principle it would later apply in Roe: the right to privacy. No one Constitutional provision explicitly secures the right to privacy, but, writing for the majority, Justice William Douglas held that multiple guarantees together form “zones of privacy.” Pointing to the First Amendment’s protection of the right of association, the Third’s prohibition on quartering of soldiers, the Fourth’s proscription of unreasonable searches and seizures, and the Fifth’s self-incrimination clause, the Court reasoned the Constitution implicitly protects privacy, especially that of married couples during sex. The Connecticut statute, in the Court’s view, swept too broadly, not merely regulating the production of contraceptive devices, but their very use, and therefore invaded impermissibly on marital privacy.

Griswold’s right to privacy set the stage for the establishment of Constitutional abortion rights. In 1972, the Court heard arguments in Roe v. Wade, a lawsuit challenging Texas’s then-ban on all abortion procedures except “on medical advice for the purpose of saving the mother’s life.” Striking down the law, the Court merely extended Griswold’s protection of privacy to the decision for a birthing person to obtain an abortion. After surveying a litany of prior decisions finding the right to privacy applied to marriage, procreation, contraception, and child rearing, Justice Harry Blackmun concluded for the Court that the right “is broad enough to encompass a woman’s decision whether or not to terminate her pregnancy.”

At the same time, however, the Court identified two distinct interests — maternal health and the fetus’s potential life — that, in its view, grow in importance and become compelling reasons to restrict access to abortion during a pregnancy. To deal with both interests, the Court set out a controversial framework under which States could determine the legality of their abortion restrictions.

According to the Court, the start of the second trimester marks the point at which maternal health becomes compelling; that is, abortion becomes more dangerous than standard childbirth at this moment. Under this rule, States could not interfere in abortions during the first trimester but could effectuate regulations on the procedure in the second trimester, so long as the limitations were “reasonably related” to preserving maternal health.

The third trimester, by contrast, marked the point at which a State’s interest in the fetus’s potential of human life becomes compelling, per the Roe Court. This trimester represented a so-called “viability” line, indicating the moment at which “the fetus [] presumably has the capability of meaningful life outside the mother’s womb.” The Court offered little in the way of justification for why fetal viability makes a State’s interest compelling, but nonetheless held that, after this point, States could entirely prohibit abortions, assuming that it made exemptions for when an abortion is necessary to preserve maternal health.

In the universe of Supreme Court jurisprudence and its plethora of legal abstractions, Roe’s relatively precise trimester framework is surprising — but was nonetheless short-lived. Nineteen years after the Court handed down its Roe decision, Planned Parenthood v. Casey modified Roe and notably rejected its trimester framework and introduced a new “undue burden” standard. Notwithstanding this small departure, however, Casey largely affirmed Roe.

At issue in Casey were five provisions of a Pennsylvania statute placing limits on abortion procedures. The first required a woman seeking an abortion to furnish “informed consent” prior to the procedure and stipulated that “she be provided with certain information at least 24 hours before the abortion is performed.” The second commanded that a parent offer informed consent prior to a minor receiving an abortion. The third mandated that a married woman notify her husband of her intended abortion and provide evidence of such notification. The fourth defined “medical emergency” exemptions to the first three requirements. Finally, the fifth provision required that abortion-providing facilities comply with particular “reporting requirements.”

Prior to examining each provision, the Court conducted an exhaustive stare decisis analysis of Roe to determine its status as binding precedent. The majority opinion, jointly authored by three Justices, identified four standards for determining Roe’s precedential force: whether the decision remained practically workable, whether individuals had come to rely on the precedent, whether the principles of law had evolved since the ruling, and whether a change in the facts compelled an overruling.

Finding no evolution in law, facts, or workability, and acknowledging that individuals had forged their sexual activity around the notion of Constitutional abortion rights, the Court held that Roe remained good law — but only its three “essential holding[s].” In other words, the Casey Court only adhered to Roe’s determinations that a woman retained the right to an abortion prior to fetal viability without State interference, that States could restrict abortion after viability with exemptions for protecting maternal health, and that States possessed “legitimate interests” in protecting maternal health and potential human life. Even though it comprised a substantial proportion of Roe’s final decision, the Casey Court argued that Roe’s precise trimester framework was too little acknowledged and implemented to remain an essential component of its abortion jurisprudence.

In lieu of a trimester framework, Casey set forth an “undue burden” standard. Under this test, only those abortion restrictions that did not have “the purpose or effect of placing a substantial obstacle in the path of women seeking abortion of a nonviable fetus” were deemed valid. Applying this standard to Pennsylvania’s law, the Casey Court found only the spousal notification requirement to be impermissible. Relative to the other informed consent requirements that the Court adjudged as only attempts to persuade a woman against obtaining an abortion, while still preserving her right to choose, the spousal notification requirement would, in effect, prevent a “significant” number of women from obtaining an abortion, particularly for those victims of domestic abuse. Per the Court, Pennsylvania could fashion laws intending to show a “profound respect” for the unborn, including initiatives to persuade typical childbirth — but statutes that substantially restrict a women’s right to choose to terminate a pre-viability pregnancy were constitutionally invidious.

The story of contemporary U.S. abortion law does not end with Casey, however. Twenty four years later, Whole Woman’s Health v. Hellerstedt (2016) further clarified the “undue burden” standard and the Court’s role as an arbiter of disputes over the constitutionality of abortion restrictions. Under the Whole Woman’s Health ruling, Casey’s “undue burden” test remains the proper standard for determining the legality of an abortion restriction — but the process of evaluating such restrictions requires balancing the burdens the law imposes with the benefits it may confer. The Court’s evaluation is also more decisive under Whole Woman’s Health: the Court can resolve “questions of medical uncertainty,” rely on evidence presented in judicial proceedings, and need not show “uncritical deference” to the evidence upon which the legislature fashioned a particular abortion restriction. Applying this more critical, quasi-cost-benefit analysis, the Court found two Texas abortion statutes to be impermissibly burdensome. This standard was affirmed yet again four years later in June Medical Services LLC v. Russo (2020), when the Court rejected a law requiring doctors at abortion facilities to have admitting privileges at a hospital within 30 miles, which it found to be a near “word-for-word” duplicate of the law at issue in Whole Woman’s Health.

If the Dobbs leaked ruling becomes law, abortion jurisprudence in the U.S. is poised to shift yet again — but this time dramatically in the opposite direction. Principally, the leaked Dobbs ruling returns to the debate first addressed indirectly in Griswold and directly in Roe: the fundamental question of whether the Constitution protects a woman’s right to choose to terminate her pregnancy. The leaked ruling excoriates the current state of U.S. abortion rights; in it, Alito disclaims the Roe Court’s analysis of the right to privacy and instead favors an analysis into the nation’s history and tradition to determine abortion rights’ fundamentality. Following the Court’s Washington vs. Glucksberg precedent, Alito surveys early common law — or the law conceived by judicial precedent — and finds abortion is not sufficiently deeply rooted in the nation’s history and tradition to warrant being a fundamental right. For judicial conservatives like Alito, this lack of fundamentality renders contemporary abortion jurisprudence a form unjustified judicial policymaking. Alito’s solution, prudent or otherwise, is to return the question of abortion rights to state legislatures.

Even if Dobbs becomes law, the abortion legal debate will by no means conclude. The prospect of a federal abortion ban or a statute endowing fetuses with the full rights of personhood passing a Republican Congress and being signed into law by a future Republican president will no doubt protract abortion litigation. Furthermore, State-sanctioned restrictions on individuals traveling to other States for the purpose of seeking an abortion represent key issue for which even Roe, Casey, and Whole Woman’s Health do not have clear answers. Indeed, if past is prologue, the next half-century of abortion jurisprudence will be just as eventful as the last.

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By James G. Hodge, Jr.

Based on the May 2022 leak of an initial draft, most believe the Supreme Court will carry through some rescission of abortion rights later this month through its final opinion in Dobbs v. Jackson Women’s Health Organization.

Already, concerns have arisen over other freedoms the Court may seriously reconsider down the road, including rights to gay marriage, intimacy, contraception, and informational privacy.

These existing rights share a common core: they are each largely constructs from prior Court decisions, and not explicitly supported by the Framers’ express constitutional language. Lacking clear recognition, textualists on the Court may ultimately attempt to void them despite decades of Supreme Court precedents. Justice Alito, the lead drafter of the leaked opinion, and other conservative Justices seem eager to toss precedence aside in favor of strict constitutional language.

Moreover, Congress, the President, and states are limited in their abilities to fight such rights reversals. On politically-hot issues like abortion, voting interests among members of Congress hardly represent general views of Americans. President Biden’s administration is already mobilizing potential response efforts to Dobbs under his executive authority, but admits its own limitations.

What about states? Liberal states like California, New York, and Illinois may hold the line against complete abolition of abortion access or other rights previously secured by the Supreme Court. States’ unique constitutional language may be interpreted by their own courts to bestow rights the federal Supreme Court denies.

However, two premier problems surface. First, state supreme court decisions apply only in jurisdictions where they are issued. That a right to access abortions exists in California means nothing in Arizona, Iowa, Texas, or Utah. Second, U.S. Supreme Court interpretations of federal constitutional law are supreme. State courts cannot interpret federal constitutional language contrary to the Supreme Court’s judgements.

So, who is left to counter denials of rights unmoored from constitutional text? Why, the Supreme Court itself.

Let’s be clear. This is not about changing the members of the Court over time, or packing the Court with new members, as multiple Presidents including Biden have considered. Rather, the limits that the Supreme Court faces in reversing precedential rights are part of the fabric of the Constitution itself.

Structural principles embedded in the Constitution like separation of powers and federalism provide bulwarks against Supreme Court domination. Separation of powers limits the domain of each branch of government – legislative, executive, and judicial. Courts interpret laws; they do not create or enforce them. Federalism divides powers among national and state governments. Consequently, manifold, state-based matters are simply out of the reach of the Supreme Court.

Like individual rights, these structural facets are part of the Constitution’s cohesive whole, which is intended to limit governmental powers over individuals and groups. Under this framework, the Court’s assessment of specific rights must invariably match the Constitution’s comprehensive structural design to survive long-term scrutiny.

If the Court strikes down abortion rights in Dobbs, for example, states’ responses will vary. Some like California will seek to protect access to abortion. Provided its efforts comport with Dobbs, principles of federalism militate against substantial Supreme Court interference. Other states may deny access to abortions through measures that defy other constitutional norms. Proposed criminal penalties against persons aiding or abetting women in Missouri seeking out-of-state abortions, for example, may hinder national commerce, which is an exclusive federal concern. Courts reviewing such laws in the future may strike them down on largely structural grounds, namely federal preemption.

The Court’s opinions may be supreme, but its role in U.S. democracy is not. In the endgame, rights originally interpreted to protect against government interference may be reinstated in part, or altogether, under constitutional structural protections. The Supreme Court should be extremely wary of denying previously-granted rights through logic that does not comport with the Constitution’s cohesive foundations. What rights it reverses today may be flanked later by structural boundaries protecting us all.

James G. Hodge, Jr., JD, LLM, is the Peter Kiewit Foundation Professor of Law and Director of the Center for Public Health Law and Policy at the Sandra Day O’Connor College of Law, Arizona State University.

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By James Toomey

In my paper Narrative Capacity (recently published in the North Carolina Law Review), I argue, among other things, that the legal system’s recognition of personal decision-making should be a function of personal identity, not (as it currently is) of an individual’s momentary cognitive functioning.

One of the arguments on this score is as follows. The background purpose of the private law is to facilitate flourishing through private ordering. For this reason, the basic private law framework should broadly correspond to people’s intuitions and lay understandings. But, as it turns out, people do not generally think that cognitive functioning alone is what matters to whether the law ought to recognize their decision-making. Instead, it seems that what people care about is whether they are, in some meaningful sense, still themselves at the time of a future decision.

In the paper, for support of this proposition, I cite myself — the results of a relatively small study I published here and here that revealed that for study participants, personal identity rather than cognitive functioning was the primary way in which they thought about their legal entitlement to make decisions. But this finding has just received additional empirical support, in the form of a larger experimental study (available here as a preprint) by Brian Earp, Ivar Hannikainen, Samuel Dale and Stephen Latham.

The study offered participants a prompt drawn from classical debates in bioethics on the ethical status of advance directives — documents composed while at full cognitive abilities that direct certain medical treatment in the event that the author later loses mental capacity. In the prompt, a character named Robin had filled out an advance directive stating that she did not want medical treatment if she were to lose capacity (or, in the “control condition” participants were given more general information about her lifelong values). However, after developing dementia and losing capacity, Robin is described as apparently happy and contended with her life. She develops a disease that will be fatal if untreated, but which is easily treatable. Participants were asked two relevant questions — (1) is Robin with dementia still her true self? And (2) should she be treated?

The headline result (vindicating the experimental model designed to test advance directive efficacy) was that it indeed made a difference for participants whether Robin had completed an advance directive in assessing whether she was still her true self, and whether she should be treated. But for our purposes here, more relevant was a subsidiary finding — that there was a strong correlation between believing that Robin was still her true self and that she should be treated. And this correlation tracked the finding in my earlier study — participants who believed that she was still her true self believed in general that she should be treated, whereas participants who believed that she was not were divided, but less likely to say so, deferring to the advance directive more often.

In other words, in this study population too — larger and in a different context of decision-making (health care as opposed to private law) — participants found the variable most germane to whether others have an obligation to respect an individual’s decision-making the continuity of their personal identity, of their true self. If they were still the same person they always had been (in the morally meaningful sense; if they were still their true selves, as the authors of the new study put it), then we ought to recognize their updated decision-making. We might presume that they have simply changed their mind. In contrast, if participants concluded that Robin was no longer, in the ethically meaningful sense, the person she had been previously, participants might think we must move beyond our default posture of recognizing personal decision-making, to some other system, perhaps governed by pre-existing advance directives. In short, the study offers further evidence that in disregarding identity, the private law’s test for recognizing personal decision-making is out of step with general intuitions.

Of course, there are many more questions to be answered. For instance, these two studies focused on different kinds of decisions (private law vs. medical decisions), and different perspectives (deciding for one’s hypothetical future self or deciding for Robin, a third-party). Future research can hone in on whether these distinctions make a difference to people’s thinking. Indeed, my study found that there was some variation in people’s thinking regarding different kinds of private law decisions, with participants wanting to retain the prerogative to make personal decisions they considered more intimate longer into the course of dementia. But at any rate, the study is powerful additional evidence bolstering an essential argument in Narrative Capacity — the current legal doctrine of capacity does not reflect general intuitions.

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By Luciano Bottini Filho

Despite the value of a constitutionally enshrined right to health, such a guarantee, on its own, does not ensure patient rights or a nuanced understanding of patient-centered care.

This article will consider the case study of Brazil as an example. Despite Brazil’s recognition of the right to health, this constitutional protection does not set sufficient standards to guide judicial decision-making around patient care.

The right to health has existed in Brazil for over 30 years, and has been important for the establishment of family health programs, as well as other local health policies. There is growing evidence from across the world that a constitutional right to health can contribute to the progress of health systems.

However, having a right to health may be insufficient, on its own, to enforce adequate regulations and ethical principles to develop a health system which respects patient autonomy and their individual values and preferences. Health systems should also be built upon a basic set of guidelines and principles, made through legislation or legally enforceable guidance documents, that ensure ethical doctor and patient relationships in medical decision-making and treatment. This subset of procedural guarantees to protect individual autonomy has been called patients’ rights, which may be upheld even without a constitutional right to health.

Both England and Wales (which do not have a constitutional right to health) have been very advanced in producing a patient-centered framework across policies and institutions. The Parliament and consultive bodies have been a fertile ground for advanced discussions around mental capacity and the law. These conversations are supported by rigorous academic studies, and yield continuously updated and revised legislation to ensure the best standards of care. Conversely, if we compare the minimum procedural safeguards for compulsory treatment in Brazil, the English system appears to be much more compatible with international standards today.

In other words, countries like Brazil, despite having a right to health, may be behind in ethical frameworks and medical legislation. A plausible explanation for these contrasting scenarios centers on the role that experts in medical law and health care regulation play in establishing a functioning and ethically-grounded health system. An active bioethics and medical law community is needed to influence the interpretation of the law in Courts to set standards that complement the right to health.

Despite its longstanding constitutional right to health, Brazil has a relatively timid epistemic community to advocate suitable laws and principles for individual patient rights. The State has never staged nationwide public debates followed by the creation of specific frameworks to address patient autonomy and informed consent. Medical law is virtually nonexistent in the curriculum of law schools, and only in recent years have some academics published works in this area of bioethics and law.

Additionally, the patient-doctor relationship in Brazil has never reached the courts as a legal problem with the same refinement as in the UK, where questions of candor and patient autonomy have experienced a thorough review. The Brazilian Supreme Court has handed down no decision that enables a dialogue around the competing interests of patients and doctors, and has been much focused on the provision of care. In one instance, Justice Carmen Lucia even lauded the fact that patients are entitled to receive compulsory treatment from the State by virtue of their right to health.

Does this mean that the right to health in some way has a negative effect on patients’ rights? Not really. The right to health simply may be more instrumental to directly fostering State obligations to build and strengthen health systems, including mental health services, but not as oriented toward regulating individual freedoms and capacity to decide what is appropriate care from a patient perspective.

To create a patient-centered, ethically-grounded health system, it may be necessary to introduce more focused legal frameworks. Consider the Convention on the Rights of Persons with Disabilities, for example, which raises questions of consent and patient choice through other means than a right to health. The CRPD process of drafting, and the subsequent comments, combatted against medical abuse, lack of proper patient support in determining options of treatment, and involuntary care. This suggests that, even in international law, the right to health cannot be a perfect starting point to hold conversations on the interplay of bioethics and human rights — which may be developed more vigorously among an epistemic community with full expertise, such as the one involved with the CRPD. Advocates and patients with disabilities have brought a wealth of arguments, views, and experiences to the table in interpreting the right to health. Such input may be simply unheard of in jurisdictions where the right to health is recognized but advocates and researchers have never exercised influence.

Still, the right to health is a great starting point to reimagine the provision of services and the resources needed to ensure a functioning health system — without it, mental health programs would not be able to offer any alternative treatment imperative to ensure patient choice. But, simultaneously, more efforts may be needed to identify the right ethical vocabulary in policymaking (disseminated across a regional legal culture), rather than simply accepting the existence of the right to health.

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