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February 05, 2019

Reproductive Genetics: Ethics and the Law

By Leah L. Seigel

Much of what makes the content so consistently rich at the Appellate Judges Education Institute is that rather than merely provide attendees with quick and easy tips for practice, presenters opt to take their willing audience on a deep dive into complicated and relevant topics, routinely raising many more questions than answers. This session was no different.

Reproductive medicine and genetics are advancing rapidly. Increasingly, courts are being called upon to resolve a variety of disputes at the intersection of science and ethics, often not actually contemplated by the letter of the law, or lawmakers. The emergence of powerful reproductive technologies brings to the surface important and difficult questions about parenthood, family, the welfare of children, and the role that our society—including the judiciary—should play in overseeing the creation of its citizens.

Leslie E. Wolf, professor of law and director for the Center for Law, Health & Society at Georgia State University College of Law, and Dr. Paul Root Wolpe, professor of medicine and director of the Center for Ethics at Emory University lent us their expertise in guiding attendees as we grappled with these complex issues.

Dr. Wolpe aptly observed and went on to show: “there is very little science fiction these days; it is just science.” Innovations in how medicine is practiced have made it so that there is no longer just one way to create life. And in many ways, according to Professor Wolf, this is a remarkably good thing, providing myriad options for people dreaming of putting together a healthy family. Yet, nothing—including reproduction—is ever so simple.

Throughout the session, the panelists had us consider a sampling of what technology is becoming more and more available in the reproductive revolution, and the related ethical implications we face in law and in society:

  • Generally, genetic testing, whether performed on an adult, or on an embryo in vitro, in vivo, or somatic, is becoming widely accessible, even commercially so. Indeed, Dr. Wolpe anticipates our genetic makeup will soon be routinely documented in our medical records and will be used to inform pharmacogenetic decisions (choosing specific drugs to treat conditions based on one’s genome). But, we must appreciate that genetic information is complex, and untrained individuals are often bad at conducting risk assessment and understanding statistics. Should genetic testing always come with counseling? How might results influence behavior where there are other major factors contributing to disease susceptibility? What about testing errors, including false paternity or identity? Should results be confidential? Even when they might have the potential to help others? What about privacy concerns? As Professor Wolf pointed out, the Genetic Information Nondiscrimination Act currently offers some protection from insurance and employment discrimination.  But how far might those protections extend? Are more needed?
  • Embryos today can receive a genetic diagnosis before parents-to-be decide whether to implant. Making decisions based on the presence of a single gene, however, can be problematic, ignoring the larger picture painted by an individual’s overall genetic makeup. Moreover, for what should we be testing? For Tay-Sachs Disease, from which a child dies in his or her first few years, often horribly so? What about breast cancer, cystic fibrosis, Alzheimer’s? Even where the known trajectory of these diseases has changed over time such that individuals live happy lives for much longer? What about testing for HLA (human leukocyte antigens) matching, in order to choose an embryo that might be a donor match for another child or family member? What about sex or other traits? What if there was a known genetic basis for homosexuality? What about health risks that also have behavioral components, like obesity or alcoholism? Aggression? Intelligence? Infidelity? Criminality? If there were such genetic links, what would, or should, we do about it? If we took disability out of our gene pool, what will that mean for our intolerance of people with varied abilities? In short, the knowledge and power to make assessments between “good” and “bad” eggs has consequences well beyond embryos.
  • In addition to testing, we have the technology to genetically engineer gametes and embryos, giving rise to the possibility of a child having three (or possibly more) genetic parents. Indeed, the “three-parent technique” has been successfully carried out abroad, allowing parents with rare genetic mutations to have healthy babies by swapping in/out the mitochondrial DNA of a donor. Of course, that begs the question: who counts as a parent under the law? Professor Wolf observed that our current laws generally state that a child born of a marriage is a child of the two partners to that marriage. Will that framework need to adapt? Dr. Wolpe provided an overview of a specific tool for genetic engineering, CRISPR-Cas9, which is basically a “cut and paste technology,” allowing the insertion of chromosomes. Should we be concerned about malevolent use of this technology to genetically engineer humans? To what extent are we comfortable with the possibility of genetic enhancement, choosing to have a child with a certain color of eyes, or with physical traits designed to become a professional basketball player? What would this mean for our expectation of perfection?
  • We’ve also made significant scientific progress with regard to stem cell use. All of the cells in our body started as stem cells, and then differentiated to become other, specialized cells. Using what we’ve learned about stem cells and this process, we are now very close (indeed, according to Dr. Wolpe, within 5 years) to being able to take a cell from the body in order to create sperm and eggs. This would allow infertile parents to become biological parents. But, it also means someone might be able to take the cells you leave behind, for instance a stray strand of hair or saliva on a drinking glass, and create sperm or eggs, perhaps without your knowledge. How could, and should, we regulate the use of such discarded cells?

These changes, and in particular how quickly they have occurred, along with increasing availability and decreasing costs to pursue them, have challenged and stretched the law, which struggles to keep up. Indeed, no sooner had this panel wrapped than only a few weeks later a controversy arose surrounding a researcher in China who used CRISPR to genetically modify twin girls when they were mere single cells to ensure they did not contract HIV from their father. While some are touting the work—referred to by the researcher as “gene surgery”—as a monumental advancement, many scientist have criticized it as unsafe human experimentation that could pose genetic risks for future generations; the researcher is facing an ethics investigation.

Additionally, we must often deal with a confusing patchwork of laws, as many of these questions are addressed as quintessentially state issues—family law and medical negligence. According to Professor Wolf, tort law has been tapped to handle many causes of action arising from use of reproductive and genetic advances. For instance, the Iowa Supreme Court has determined the parents of a disabled child can sue for wrongful birth, premised on the medical professional’s failure to inform the parents of the disability, despite its visibility on an ultrasound. These cases are based on the idea that the parents would have terminated pregnancy had they known. Kansas has come out the other way, finding a law prohibiting civil actions for wrongful birth to be constitutional. In other lawsuits, sperm banks and doctors have faced legal liability where commercial DNA tests have revealed dozens of babies with the same paternal DNA, that of the fertility doctor rather than a purported donor. As another example, the fate of frozen embryos in divorce has given rise to legal disputes, with Missouri finding the embryos to be marital property, but with special character, thus requiring consent from both parties to do anything with them. More tough questions are undoubtedly on the horizon.

The session ended with a final, critical question from the panelists, as we consider social justice and the economic costs of these technologies: who should get access to them? The answer to this and other questions may have eluded us in Atlanta, and will continue to do so for some time, but we can be certain that the conversations launched as a result of asking the question couldn’t be more important. 

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Leah L. Seigel

Leah L. Seigel is an associate in the Indianapolis office of Barnes and Thornburg LLP, where she is a member of the Appellate Practice Group, focusing on commercial and intellectual property law.  Before joining the firm, Leah spent two years serving as judicial law clerk to the Honorable Mark S. Massa of the Indiana Supreme Court. Leah graduated with honors from Indiana University Maurer School of Law, and she remains actively involved by co-teaching a course on Intellectual Property Appellate Advocacy.