Environmental Factor, April 2008, National Institute of Environmental Health Sciences
Looking Ahead to Legal and Ethical Implications of Epigenetics
By Eddy Ball
If bioethicist Mark Rothstein, J.D., is successful in his mission, the legal and scientific communities may be able to consider new research findings about the growing list of diseases related to epigenetics with at least some appreciation of their legal and ethical implications. That was one of the themes in the NIEHS grantee's February 26 presentation at the annual Rabbi Seymour Siegel Memorial Lecture in Ethics and Law- and in the panel discussion which followed. Rothstein's talk, titled "Exposed Today, Grandchildren Pay," was held at the Duke University School of Law.
Rothstein (http://louisville.edu/bioethics/directory/mark-a.-rothstein), who is a distinguished professor of law and medicine at the University of Louisville, was joined by a group of Duke University panelists that included NIEHS grantee and recognized authority on epigenetics, Randy Jirtle, Ph.D. (http://www.geneimprint.com/lab/personnel/?jirtle), professor of Radiation Oncology at Duke Medical Center; Robert Cook-Deegan, M.D. (http://sanford.duke.edu/people/faculty/cook-deegan-robert-m), director of the Center for Genome Ethics, Law and Policy (GELP); and Lauren Dame, J.D. (https://law.duke.edu/fac/dame/), GELP associate director and associate of the Trent Center for Bioethics, Humanities and History.
Opening with the now familiar definition of epigenetics as the study of heritable changes in gene expression that are unrelated to DNA sequence variation, Rothstein explored the impact of new discoveries on regulation and liability, intergenerational equity, eugenics, environmental justice, privacy and confidentiality, and equitable access to health care.
Although Rothstein elaborated on the many complex challenges in epigenetics research and its many unanswered questions, he was nonetheless adamant in his call for scientists, legal scholars and ethicists to start now to prepare for the impact of the new findings. "Law and ethics do not do well in catch-up mode," he reminded the audience, "and science does not wait."
Rothstein noted that epigenetics shares a subset of issues associated with the mapping of the human genome, which he said was arguably the first scientific effort to build in a bioethical component from the outset. However, as his talk made clear, these shared issues hardly exhaust the range of concerns arising from the study of epigenetics, a biological process that by definition operates at the intersection between genes and environment, impacting ethical and legal concerns related to both.
As Rothstein explained, epigenetic modifications are caused by such environmental factors as exposures to chemicals and radiation, diet and lifestyle that mark DNA, either turning on or turning off gene expression. Although epigenetic modifications are potentially reversible - and some are actually beneficial to the organism - they can be passed from generation to generation with potential transgenerational health effects presenting years later in descendents of the individuals who were exposed.
Like genetics, epigenetics raises important issues related to privacy, discrimination, employment and the right to know. The new science also raises concerns about eugenics, a movement devoted to improving the human species through controlled mating, because it will likely be possible at some point in the future to test individuals for epigenetic alterations. With this ability to identify these modifications will come the danger of results being used as a justification for encouraging or requiring testing of individuals - and as a rationale for controlling the lives of people so affected.
Because the changes are triggered by environmental exposures that may be preventable and potentially reversible, issues surrounding epigenetics research also include individual responsibility, legal liability, health disparity and environmental justice. At the present time, Rothstein argued, we are just beginning to articulate the necessary questions about the obligations individuals and society as a whole may have for the health and well being of the most vulnerable people in society and their descendants, generations into the future.
The Siegel Lecture is held each year at the Duke University School of Law (http://www.law.duke.edu/). The lecture is sponsored by labor lawyer and former Duke Law Professor Allen Siegel, a member of the Duke Law class of 1960. The lecture series honors the memory of Siegel's brother, Rabbi Seymour Siegel, a noted scholar of ethics and theology who died in 1988. The lecture was introduced by Dean David Levi, J.D., and hosted and organized by Professor Dorianne Coleman, J.D. Rothstein's talk and previous Siegel Lectures are available as webcasts (http://www.law.duke.edu/webcast/?match=Siegel+Lecture) courtesy of the School of Law.