PUBLISHED:February 29, 2008

Exposed today, grandchildren pay

Feb. 29, 2008--The relatively new science of epigenetics contains tremendous promise for identifying the cause of many serious diseases and possibly leading to cures. But it also raises serious ethical and legal challenges regarding liability effects, privacy, access to health care, and eugenics, among other issues, said medical ethicist Mark Rothstein, who delivered Duke Law School’s seventh annual Rabbi Seymour Siegel Memorial Lecture in Ethics on Feb. 26.

Epigenetics refers to the modifications of gene expression that do not involve changes in the DNA sequence, explained Rothstein, the Herbert F. Boehl Chair of Law and Medicine and director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine. These are, in effect, chemical changes on the DNA caused by such environmental agents as toxic chemicals, radiation, cigarette smoke, and diet. Not only can they lead to increased risk of cancer, cardiovascular disease, and diabetes, they can be passed on from one generation to the next. While they tend to be reversible, the susceptibility to epigenetic change is not just a function of the dose to which an individual is exposed, said Rothstein, but also the time in life exposure occurs. Neonatal and prenatal exposures, he said, can have particularly strong epigenetic effects.

The regulatory process has not yet addressed the identification through epigenetic research of new ways in which human health can be affected by environmental exposures, though it will inevitably have to, said Rothstein. It also remains to be seen how legal approaches to multi-generational liability will be affected. While the synthetic estrogen “DES” increased the prevalence of reproductive cancers and diseases in both the daughters and granddaughters of women who took it, courts have refused to allow “third-generation recoveries,” noted Rothstein, speculating that increased knowledge of transgenerational epigenetic effects could lead to a reconsideration of the doctrine.

Discrimination law, too, might be reconsidered, he said, if employers feel increased “moral and legal pressure” to exclude fertile women from occupational exposures with demonstrated epigenetic effects. Whether anti-discrimination laws would apply to epigenetic discrimination as well as genetic discrimination is also in question, he said.

Turning to ethics, Rothstein argued that “epigenetics highlights the effects of inequality in living and working conditions, as well as a range of disparities in societal opportunities, including income, housing, employment, and access to health care.” It additionally raises concerns about privacy and stigmatization, as well as difficult questions regarding societal obligations to preserve the soundness of the human genome and epigenome for the benefit of future generations, he said.

With epigenetic research potentially creating a wealth of sensitive information about an individual’s likelihood of experiencing health problems and passing them on to children, and public initiatives to maintain comprehensive medical records online, new privacy concerns arise, said Rothstein. “Shouldn’t individuals have the right to keep certain parts of their health records private? Do individuals have the right not to know certain information that might be very sensitive and troubling to them?”

He identified environmental justice as a key ethical consideration. “Many of the substances shown to cause epigenetic harm, such as pesticides, toxic chemicals, diesel exhaust, and airborne pollutants are not distributed randomly in our society. Exposures are often linked with poverty, discriminatory land use, and sub-standard living and working conditions,” he said. “The populations who are exposed to these substances that cause epigenetic harms are also more likely to have pre-existing health conditions, and less likely to have ongoing and effective comprehensive medical care.” Society has heightened moral obligations to remediate the risks and prevent exposures when its most vulnerable groups are at risk and to make health care universally accessible, he argued.

“A just society ought to provide universal access to health care because it is an instrumental good that facilitates a range of human flourishing,” he said, adding that without a reasonable level of health, individuals are unable to participate meaningfully in society and may have their lives significantly shortened. And given the potentially “self-perpetuating” effects of transgenerational epigenetics, particularly in vulnerable populations, “a just society ought not to permit future generations to experience the debilitating health effects caused by current environmental exposures when the health effects are known or knowable and the environmental conditions are preventable or remediable,” he said.

Rothstein further proposed that there is an obligation to future generations to refrain from activities that cause environmental harm to the planet which extends to environmental harms “to the genomes and epigenomes of future generations of humans.”

While the obligation of one generation to preserve the quality of the human genome and epigenome for future generations should not give rise to controversy, said Rothstein, “there’s a danger that if we become too preoccupied and concerned with the genetic links we’re passing on to our successor that it could quickly turn into eugentic policies. It is possible that pre-conception, pre-implantation, and prenatal testing for epigenetic harms could be used as a way of preventing the transmission of transgenerational harms.” If individuals feel societal pressure to undergo even voluntary testing, it can lead to indirect eugenics, he said, and could have the further result of shifting the moral responsibility of those entities from polluters and manufacturers of toxins to parents, under the theory that they didn’t act responsibly to avoid potential harms.
“In an area where there are so many unknowns, I think there are two clearly known principles at play here,” Rothstein concluded. “Law and ethics do not do well in catch-up mode. And science does not wait.”

Professor Rothstein’s talk, and the response offered by three Duke University experts, is available as an on-demand webcast.

The annual Rabbi Seymour Siegel Memeorial Lecture in Ethics is sponsored by labor lawyer Allen Siegel ’60 to honor the memory of his brother, Rabbi Seymour Siegel, a noted scholar of ethics and theology, who died in 1988.