Reproductive Genetic Medicine in a Post-Dobbs World: Will it Make Life Harder for People with Genetic Disease?

Post-Dobbs abortion restrictions impact access and choice in the context of reproductive genetic medicine, raising serious reproductive justice concerns. The consequences of these restrictions are particularly acute and far-reaching for individuals with genetic conditions and their families.

Why reason-based abortion bans are not a remedy against eugenics: an empirical study.

In Box v Planned Parenthood, Justice Thomas wrote an impassioned concurrence describing abortions based on sex, disability or race as a form of 'modern-day eugenics'. He defended the challenged Indiana reason-based abortion (RBA) ban as a necessary antidote to these practices. Inspired by this concurrence, legislatures have increasingly enacted similar bills and statutes allegedly as a prophylactic to 'eugenics', its underlying discrimination, and the racial disparities eugenics caused. This article tests my hypothesis that this legislative focus on eugenics is largely performative, rather than evidence of true concern about the discrimination and disparities underlying eugenics. My research examined state laws in several areas that fall within narrow and broad understandings of eugenics to determine whether states with RBA bans have implemented policies to counteract eugenics more broadly. My analysis shows that they generally have not. Instead, the apparent motivation is to commandeer concerns about eugenics to restrict reproductive rights. This legislative mission is hypocritical, and it harms the very groups impacted by the eugenics movements-minorities, women, people with disabilities, the LGBTQ+ community, and immigrants. Ultimately, it has led us to Dobbs, which makes everyone vulnerable to the eugenics policies Thomas condemns by undercutting previous constitutional protections against eugenics.

The goldilocks conundrum: Disclosing discrimination risks in informed consent.

Informed consent is a foundational ethical and legal principle in human subjects research and clinical care. Yet, there is extensive debate over how much information must be disclosed to meet ethical goals and legal requirements, especially about non-medical risks. In this online, survey-based experiment of a diverse sample of the US general population, we explored one aspect of this debate by testing whether the level of detail included in informed consent regarding genetic anti-discrimination protections alters individuals' willingness to participate in a hypothetical research study and their concerns regarding genetic discrimination. Participants were randomized to receive sample informed consent language with one of three levels of disclosure regarding the protections and limitations of the Genetic Information Nondiscrimination Act (GINA). Our sample (n = 1,195) had a mean age of 45.9 (SD = 17.9) years and 40% with ≤high school education. Participants were 51.3% female and 36.7% non-Hispanic White. On average, those who received consent language with none of GINA's limitations highlighted were more willing to participate than those who were warned about various gaps in GINA. They also had significantly lower perceived risk of discrimination than those presented with the most information about limitations. Our study found that providing more comprehensive information about GINA notably lessened willingness to participate in the hypothetical studies, highlighting the need for clinicians and researchers to thoughtfully consider how to disclose anti-discrimination risks in informed consent.

Regulating forensic genetic genealogy.

Maryland 's new law provides a model for others.

The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage.

PURPOSE: More than a decade after the Genetic Information Nondiscrimination Act (GINA) was passed, there is a paucity of research on the general public's awareness of GINA. This study's objective was to assess knowledge of GINA and concerns of genetic discrimination. METHODS: A quota-based sample of US adults (N = 421) was recruited via Qualtrics Research Services to complete an online survey. RESULTS: Overall, participants had a mean age of 43.1 (SD = 13.9), 51.8% identified as female, 63.1% identified as non-Hispanic White, and 38.4% had ≥4-year college degree. Respondents reported relatively low subjective knowledge of GINA (M = 3.10, SD = 1.98; 7-point Likert scale). Among respondents reporting high subjective knowledge of GINA (16.2%), 92.6% incorrectly reported or did not know that GINA does not covers life, long-term care, and disability insurance, and this number was 82.4% for auto or property insurance. Respondents were relatively likely to decline genetic testing due to concerns about results being used to determine eligibility for employment (M = 4.68, SD = 1.89) or health insurance (M = 4.94, SD = 1.73). There were few consistent demographic associations with either subjective or objective knowledge of GINA. CONCLUSION: This study highlights continued public concern about genetic discrimination and a lack of awareness and understanding of GINA and its scope of protections.

Legal challenges in reproductive genetics.

Recent advancements in reproductive genetics have resulted in the availability of an extraordinary amount of new and detailed information for patients and providers. Whereas this information can inform many who are facing difficult clinical decisions, it can also introduce complex and uncertain choices. Expanded carrier screening and preimplantation genetic diagnosis for aneuploidy are important examples of new genetic techniques that are now widely used in reproductive medicine. This paper will explore these techniques through a medical-legal prism to better understand the opportunities and obligations incumbent on both patients and providers in this new age of genetic diagnosis.

Reproductive Technologies and Free Speech.

The Supreme Court and lower courts have not articulated a clear or consistent framework for First Amendment analysis of speech restrictions in health care and with respect to abortion. After offering a coherent doctrine for analysis of speech restrictions in the doctor-patient relationship, this piece demonstrates how potential legislation restricting patient access to information from reproductive testing intended to limit "undesirable" reproductive choices would violate the First Amendment.

Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA).

Globally, due to public concerns of genetic discrimination, some countries and insurance industries have adopted policies restricting insurer use of genetic information, such as the US Genetic Information Nondiscrimination Act (GINA). This study reports on combined analysis of two surveys assessing public knowledge of GINA and concerns of genetic discrimination in a diverse U.S. sample (N=1616). We focus on whether occupation, genetic testing history, and insurance status are correlated with knowledge of GINA or concerns of discrimination. While bivariate analysis identified some populations with higher subjective/objective knowledge and concern relative to counterparts, multivariable regression identified very few significant associations with outcomes of interest. Overall, this study highlights lack of awareness and understanding of GINA, even among subpopulations hypothesized to have greater knowledge of the law. These findings have implications for the broader debate around insurer use of genetic information.

Legal Challenges in Genetics, Including Duty to Warn and Genetic Discrimination.

This review will explore two legal issues in genetic counseling: genetic discrimination and the duty to warn. It emphasizes the complexity and variability of federal and state genetic nondiscrimination protections in the United States and how the many gaps in such protections may affect people pursuing genetic testing. The limited law addressing legal obligations genetic counselors owe at-risk relatives likely does not require counselors to warn relatives directly about genetic risks. Whether it permits them to make such disclosures, however, is more uncertain and may depend on the jurisdiction.

The tyranny of choice: reproductive selection in the future.

This article explores the enormous challenges to reproductive decision making that could result from two emerging technologies: the potential capacity to create vast numbers of embryos for preimplantation genetic diagnosis and the ability to obtain ever more predictive information about the embryo. Together these technologies could change our reproductive experience, exacerbate existing inequities, and profoundly affect reproductive decision making. Simply comprehending the dizzying amounts of predictive information about the health and traits of future children will overwhelm future parents. But trying to choose embryos with the 'best' combination of genetic variants could be paralyzing. Nevertheless, numerous pressures will make this technology alluring, compelling providers to develop remedies to assist future parents with these difficult reproductive decisions. The remedies, however, will create their own challenges. Some might test the limits of reproductive autonomy and heighten social inequities. A particularly vexing remedy would be the development of algorithms for embryo selection, which could routinize reproductive decisions, reduce societal diversity, exacerbate 'choice overload' effects, challenge professional norms, and raise the specter of eugenics. Ultimately, this article is a cautionary tale urging circumspection as technological advancements seem to propel us inevitably toward a reproductive future that could create a tyranny of choice.

GINA at 10 years: the battle over 'genetic information' continues in court.

Ten years ago, the Genetic Information Nondiscrimination Act ('GINA') came into law. While it was unclear how prevalent genetic discrimination was, GINA was enacted preemptively to prevent discrimination in insurance and employment. It also created uniform protections to remedy a confusing patchwork of state and federal protections. Finally, Congress hoped GINA would allay public fears of genetic discrimination that discouraged people from undergoing genetic testing and participating in genetics research. To address those fears, Congress enacted robust protections against genetic discrimination in health insurance and employment, in part, by defining 'genetic information' as broadly as possible. Over the last ten years, however, the courts have been battling over the meaning of 'genetic information'. One interpretive approach adheres strictly to GINA's statutory language; the second interprets the definition restrictively and contrary to the plain meaning of GINA and its underlying goals. While this interpretive conflict demonstrates the difficulty of distinguishing genetic information from non-medical information, this article argues for the broader interpretation. Such an interpretation reflects Congress's choice among imperfect definitional options and it furthers the goal of creating strong protections in health insurance and employment. Finally, definitional consistency is necessary to achieve uniform protections against genetic discrimination.

In vitro gametogenesis: just another way to have a baby?

Advances in science have made possible the derivation of reproductively viable gametes in vitro from mice. The research on human cells suggests that in vitro gametogenesis ("IVG") with reproductive potential may one day be possible with humans. This technology would allow same-sex couples to have children who are biologically related to both of them; allow single individuals to procreate without the genetic contribution of another individual; and facilitate "multiplex" parenting, where groups of more than two individuals procreate together, producing children who are the genetic progeny of them all. IVG could also make prenatal selection a much more refined and comprehensive process than it is today, allowing for the selection of embryos on the basis of multiple factors. Evaluating IVG under a relational autonomy framework, this article argues that the potential benefits or harms of IVG depend on the social, scientific, and legal context in which it is situated and how it is used. It concludes that IVG is preferable to some forms of assisted reproductive technologies in certain instances and substantially more problematic in others. Finally, it suggests that its capacity to "perfect" prenatal selection in many ways exacerbates the problematic aspects of increasingly expansive prenatal selection.

The first amendment and physician speech in reproductive decision making.

Courts are divided as to whether abortion informed consent mandates violate the First Amendment. This article argues that given the doctor's and patient's unique expertise, the patient's strong interests in autonomous decision making, and the fact that these laws regulate speech, rather than conduct, heighted or strict scrutiny should apply to such mandates.

The problems of liminal states, line drawing, and false dichotomies.

This commentary focuses on the tenuous line between health and disease and the conflicting characterizations of genetic predisposition that sometimes place it on one side of that line, and sometimes on the other. For example, GINA uses the line between health and disease to distinguish between, respectively, the healthy (including, those with genetic predispositions), who are shielded from discrimination, and those with 'manifested illness,' who are not. At the same time, some have argued that the Americans with Disabilities Act protects individuals with genetic predispositions, relying on a label akin to disability, as opposed to health, to characterize this group. Similarly, courts have described genetic predisposition as a disease of sorts to justify insurance payment for medical intervention. Attempts to fit genetic predisposition neatly into the binary world of health or illness can be problematic because this dichotomy doesn't capture the complex continuum between those states. Some individuals reside in yet another 'liminal' state when they develop mild symptoms or biomarkers, placing them somewhere between genetic predisposition and actual disease manifestation. As a result, they may be unprotected under existing frameworks. Liminal states are therefore problematic not only with respect to insurance reimbursement, but in other areas as well.

The politics of information: informed consent in abortion and end-of-life decision making.

The politics of reproduction dominate the political landscape now more than ever. One area of controversy has been informed consent statutes for abortion, which have been praised by the pro-life movement but derided by the pro-choice movement. More recently, legislatures have begun to enact informed consent statutes with respect to end-of-life decision making, an area almost as politically controversial as abortion. Like many abortion disclosure laws, some of these have been entitled "Right to Know" statutes. Yet, the supporters and opponents of each set of statutes tend not to be the same, aligning to a large extent based on their place in the culture wars over life and death. In this Article, I strive not only to show the remarkably similar critiques each side marshals but also to use these concerns to think in more nuanced ways about the goals of informed consent and whether the disclosure mandates achieve those goals. I first argue in favor of the aspirational goals of informed consent as a process that allows patients to participate in their medical decision making. While conceding the inherently political nature of abortion and end-of-life care, I also contend that the significance of decisions regarding those matters warrants, at least in theory, legislative efforts to ensure that patients have the opportunity to engage in deliberative and informed decision making. In describing and responding to the similar critiques of both sets of laws--the political bias of the statutes; the efforts to persuade, especially with non-medical information; the potential vulnerability of the targeted audience; and the interference with physician discretion--I uncover and challenge some of the presumptions about informed consent inherent in those critiques. Although information that persuades or influences is not per se problematic, I argue that disclosure of information that is inaccurate, untrue, or emotionally inflammatory harms informed consent. Even well-crafted informed consent mandates, however, are insufficient to promote truly deliberative decision making because they oversimplify the complexity of these decisions and fail to respond to the fact that informed consent is a process that requires more than simply the delivery of information; it also requires dialogue and discussion. This Article ends with suggestions for ways to try to promote such a dialogue.

From sweaty towels to genetic stats: stalking athletes for their genetic information.

With recent advances in genetics, sports fans may soon have access to a new category of statistics: genetic information. With patented correlations between genetics and athletics, and with the emergence of a growing and unregulated market in direct-to-consumer ("DTC") genetic testing, fans may be able to obtain an athlete's genetic information on their own, as long as they can access any item that may have some DNA on it. In some jurisdictions, they may even be able to do so legally, notwithstanding the potential harms to the athletes and their privacy.

Disentangling privacy from property: toward a deeper understanding of genetic privacy.

With the mapping of the human genome, genetic privacy has become a concern to many. People care about genetic privacy because genes play an important role in shaping us--our genetic information is about us, and it is deeply connected to our sense of ourselves. In addition, unwanted disclosure of our genetic information, like a great deal of other personal information, makes us vulnerable to unwanted exposure, stigmatization, and discrimination. One recent approach to protecting genetic privacy is to create property rights in genetic information. This Article argues against that approach. Privacy and property are fundamentally different concepts. At heart, the term "property" connotes control within the marketplace and over something that is disaggregated or alienable from the self. "Privacy," in contrast, connotes control over access to the self as well as things close to, intimately connected to, and about the self. Given these different meanings, a regime of property rights in genetic information would impoverish our understanding of that information, ourselves, and the relationships we hope will be built around and through its disclosure. This Article explores our interests in genetic information in order to deepen our understanding of the ongoing discourse about the distinction between property and privacy. It develops a conception of genetic privacy with a strong relational component. We ordinarily share genetic information in the context of relationships in which disclosure is important to the relationship--family, intimate, doctor-patient, researcher-participant, employer-employee, and insurer-insured relationships. Such disclosure makes us vulnerable to and dependent on the person to whom we disclose it. As a result, trust is essential to the integrity of these relationships and our sharing of genetic information. Genetic privacy can protect our vulnerability in these relationships and enhance the trust we hope to have in them. Property, in contrast, by connoting commodification, disaggregation, and arms-length dealings, can negatively affect the self and harm these relationships. This Article concludes that a deeper understanding of genetic privacy calls for remedies for privacy violations that address dignitary harm and breach of trust, as opposed to market harms, as the property model suggests.