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Looking Ahead to Legal and Ethical Implications of Epigenetics

By Eddy Ball
April 2008

“Epigenetics highlights the effects of inequality in living and working conditions, as well as a range of disparities in societal advantages,” Rothstein argued as he described the implications on environmental justice.
“Epigenetics highlights the effects of inequality in living and working conditions, as well as a range of disparities in societal advantages,” Rothstein argued as he described the implications on environmental justice. (Photo courtesy of Steve McCaw)
In her introduction, Coleman said of Rothstein, “It would take me most of the time, literally, allotted for this lecture to mention all of his accomplishments and honors.”
In her introduction, Coleman said of Rothstein, “It would take me most of the time, literally, allotted for this lecture to mention all of his accomplishments and honors.” (Photo courtesy of Steve McCaw)
During Rothstein’s talk, Dean Levi, center, sat with sponsor Allen Siegel and his wife, Rochelle, right, and panelist Dame, left.
During Rothstein’s talk, Dean Levi, center, sat with sponsor Allen Siegel and his wife, Rochelle, right, and panelist Dame, left. (Photo courtesy of Steve McCaw)
Panelist Jirtle, right, addressed the complexities of interpreting epigenetic research findings: “I can’t extrapolate… [epigenetic responses in one strain of mice] even to another strain, let alone to other species of animals.”
Panelist Jirtle, right, addressed the complexities of interpreting epigenetic research findings: “I can’t extrapolate… [epigenetic responses in one strain of mice] even to another strain, let alone to other species of animals.” (Photo courtesy of Steve McCaw)
“The science is changing,” insisted Cook-Deegan. “It turns out that genes aren’t as simple as we thought they were.”
“The science is changing,” insisted Cook-Deegan. “It turns out that genes aren’t as simple as we thought they were.” (Photo courtesy of Steve McCaw)
On the positive side, observed Dame, “Epigenetics will help bring back environment as an equally important player in health.”
On the positive side, observed Dame, “Epigenetics will help bring back environment as an equally important player in health.” (Photo courtesy of Steve McCaw)
Like many of the students who made up the bulk of Rothstein’s audience, this young man seemed to struggle with the connections between the unfamiliar world of laboratory research and the arena of contemporary legal and ethical issues — as well as with his course and bar exams.
Like many of the students who made up the bulk of Rothstein’s audience, this young man seemed to struggle with the connections between the unfamiliar world of laboratory research and the arena of contemporary legal and ethical issues — as well as with his course and bar exams. (Photo courtesy of Steve McCaw)

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/hsc/medmag/ss02/rothstein.html)Exit NIEHS Website, 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)Exit NIEHS Website, professor of Radiation Oncology at Duke Medical Center; Robert Cook-Deegan, M.D. (http://www.genome.duke.edu/people/faculty/cookdeegan/)Exit NIEHS Website, director of the Center for Genome Ethics, Law and Policy (GELP); and Lauren Dame, J.D. (http://www.genome.duke.edu/people/faculty/dame/)Exit NIEHS Website, 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/)Exit NIEHS Website. 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)Exit NIEHS Website courtesy of the School of Law.

Veteran legal scholars in the audience, such as Duke’s Jerome Reichman, J.D., center, the Bunyan S. Womble Professor of Law, also appeared eager to hear Rothman’s arguments about the impact of the new science on the legal community.
Veteran legal scholars in the audience, such as Duke’s Jerome Reichman, J.D., center, the Bunyan S. Womble Professor of Law, also appeared eager to hear Rothman’s arguments about the impact of the new science on the legal community. (Photo courtesy of Steve McCaw)


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