Symposium 2024

Medical and Legal Uncertainty in Emerging Genetic Technologies

Saturday, March 23, 2024

Please join JOLT for its 2024 symposium. This symposium brings together legal and medical scholars to discuss emerging genetic technologies and their implications. The panels will cover consumer and reproductive technologies, as well as regulatory and social implications of these genetic technologies. This event is co-sponsored by the Health Law & Policy Institute at the University of Houston, the University of Maryland Francis King Carey School of Law's Law & Health Care Program, and the University of San Diego School of Law.

Register Here!


(All times in ET)

Breakfast & Welcome: 8:30 – 9:10

Panel 1: Regulation & Liability: 9:15 – 10:15

  • I. Glenn Cohen (Harvard Law School) & Jin Park (Harvard Medical School & Yale Law School), The Regulation of Polygenic Risk Scores
  • Valerie Gutmann Koch (University of Houston Law Center), Previvorship and Medical Uncertainty
  • Jessica L. Roberts (University of Houston Law Center) & Sonia Suter (George Washington University School of Law), The Medical Malpractice Implications of Consumer-Generated Polygenic Scores

Panel 2: Reproduction: 10:30 – 11:15

  • Doron Dorfman (Seton Hall Law School), Choosing Difference
  • Gabriel Lázaro-Muñoz (Harvard Medical School), Dov Fox (University of San Diego School of Law), Meghna Mukherjee (Baylor College of Medicine), Stacey Pereira (Baylor College of Medicine), Sonia Suter (George Washington University School of Law), Choosing Your "Healthiest" Embryo After Dobbs? Truth in Advertising and Informed Consent

Panel 3: Consumer Technologies: 11:30 – 12:15

  • Leah R. Fowler (University of Houston Law Center), Appification of Genetic Risk
  • Teneille Brown (University of Utah College of Law), The Opposite of Empowering

Lunch & Informal Discussion: 12:15 – 13:30

Panel 4: Social Implications: 13:30 – 14:30

  • Shawneequa Callier (George Washington School of Medicine & Health Sciences) & Anya Prince (University of lowa College of Law), Legal Uncertainties in Sociogenomic Polygenic Scores
  • Yaniv Heled (Georgia State University College of Law) & Liza Vertinsky (University of Maryland Francis King Carey School of Law), The Theory of Genetic Dimensions in the Law and Polygenic Risk Scores
  • Natalie Ram (University of Maryland School of Law), Everything Old is New Again: Polygenic Scoring and the Criminal Legal System

Spring 2024 Symposium Abstracts

I. Glenn Cohen & Jin Park, The Regulation of Polygenic Risk Scores

This paper explains what a polygenic risk score (PGS) is and why it matters. It examines FDA’s current statutory authority and approach to regulating these scores and considers what it would mean to take seriously the score as a regulatory category. It makes recommendations as to how FDA and other regulatory bodies should approach the task of ensuring safe, efficacious, and ethical use of these scores.

Valerie Gutmann Koch, Previvorship and Medical Uncertainty

Previvors—those who are not yet sick, but who have a genetic predisposition to disease—face profound uncertainty. This uncertainty complicates decision-making around screening, prevention, and prophylactic interventions. The legal doctrine of informed consent fails to adequately address this uncertainty, presenting problems for respecting previvor autonomy and facilitating informed choices. By applying Uncertainty Management Theory, this article argues for a new legal standard for informed consent that places greater emphasis on patient comprehension, with the aim of ameliorating some of the inherent uncertainties of previvor decision making.

Jessica L. Roberts & Sonia Suter, The Medical Malpractice Implications of Patient- Generated Polygenic Scores

Polygenic scores (PGS) calculate the genomic risk for complex conditions. While they have garnered significant attention, these assessments are still primarily in the research stage and not widely available to clinicians. Nonetheless, individuals can go online and obtain PGS for a wide range of conditions. These patient-generated PGS may show up in clinic, should people share this information with their doctors. However, unlike much of conventional genetic testing, physicians cannot simply verify the findings. This paper considers the medical malpractice implications for unsolicited PGS, asking should physicians take this information into account or should they disregard it?

Doron Dorfman Choosing Difference

As development in genetic science allowed for the discovery of traits and impairments in embryos, criticism around what Judith Darr and others called the “new eugenics” emerged. Alongside these concerns, however, some attention has been paid to individuals who intentionally selected a disabled embryo as in the case of a Deaf lesbian couple deliberately creating a deaf child (later to graduate from UVA Law School). This essay will examine a thought experiment about the law and ethics of choosing to create a disabled baby vs. an LGBTQ baby. While the latter is not yet scientifically possible, considering the possibility illuminates the limits of the social constructionist models of disability and sexuality. Alongside examples from the legal and bioethics literature, this essay will also engage with examples from playwrights who dealt with the topic of choosing for and against identity.

Gabriel Lázaro-Muñoz, Dov Fox, Meghna Mukherjee, Stacey Pereira, Sonia Suter, Choosing Your “Healthiest” Embryo After Dobbs? Truth in Advertising and Informed Consent

Genetic testing companies are hyping new forms of embryo selection directly to fertility patients and prospective parents. Our project examines the ethical, social, and legal implications for truth in advertising and informed consent.

Teneille Brown, The Opposite of Empowering

This paper will discuss polygenic risk score prediction through a capitalism lens—how we provide genetic risk prediction tools for depression, suicidality, and addiction that put the lions share of responsibility on the individual. But these tests are at present only accessible for a tiny slice of the population, who may or may not even feel empowered by the data, given their situation. I will argue that neoliberalism is the cause of much of our population’s mental illness, and we cannot use neoliberalism (through for-profit PRS tests) to get our way out of it.

Leah R. Fowler, Appification of Genetic Risk

Appification refers to the development of applications for mobile devices. It also represents a process of abstracting complex systems down to discrete and simplified parts. This essay considers appification as both reality and metaphor in the context of the consumer market for polygenic risk scores. It then discusses the legal and policy implications.

Shawneequa Callier & Anya Prince, Legal Uncertainties in Sociogenomic Polygenic Scores

Sociogenomics is a field of research that studies the effects of genes on social and behavioral phenotypes. Researchers across disciplines, including sociology, economics, political science, psychology, cybersecurity, and organizational research, have found promise in using polygenic scores (PGS) to better understand social science outcomes and vice versa. While the development of PGS in sociogenomics is relatively new, the field has been moving forward rapidly. In this manuscript, we describe the legal frameworks most applicable to emerging uses of sociogenomic PGS, gaps and uncertainties in the law, and potential pathways forward to maximize the benefits of these technologies and reduce harm.

Yaniv Heled & Liza Vertinsky, The Theory of Genetic Dimensions in the Law and Polygenic Risk Scores

In this paper, we use the Theory of Genetic Dimensions as a framework for elucidating the genetic interests implicated by the use of polygenic risk scores in reproductive decision-making.

Natalie Ram, Everything Old is New Again: Polygenic Scoring and the Criminal Legal System

Behavioral genetics has long sought to associate genetic variations with observed behavioral, social, or psychological traits. One area of behavioral genetics of particular interest to the criminal legal community has been research on genetics, antisocial or violent behavior, and criminal wrongdoing. In earlier eras of genomic research, these efforts often proposed candidate genes that, alone or in combination with identified environmental factors, would heighten risks for violent behavior and criminal activity. But these efforts largely lacked scientific validity, reliability, and explainability. Polygenic scores (PGS), which calculate whole genomic risk for complex conditions, may reinvigorate interest in genomic explanations for criminal behavior. This paper considers the ethical, legal, and social implications that such work occasions in the criminal legal system. Might courts more readily admit evidence of a high PGS for violent behavior as a mitigating factor in criminal cases? How might law enforcement investigators seek to make use of crime-related PGS to identify suspects for investigation—or simply high risk individuals for enhanced surveillance? And would any such efforts be ethically, legally, socially, or scientifically defensible?