Human genetics advances raise legal and ethical issues

Dylan Thomas

A University of Georgia law professor said advances in human gene therapy, which might soon allow doctors to detect a potential genetic disease in a patient, will have serious legal and ethical implications.

Speaking at the Weisman Art Museum on Tuesday, professor Edward Larson used the history of eugenics, or selective breeding, as a backdrop for a discussion about how current anti-discrimination laws attempt to protect people from genetic discrimination in areas such as employment and insurance. He also discussed the combination of medical and social factors that determine what a disability is.

“This genetic technology has given us the ability to influence the future in ways it has never been influenced and shape what people are like in the future,” Larson said. “And the issue is: How’s that going to be used?”

Larson said genetic testing determines only the susceptibility of acquiring a genetic disease and does not guarantee the person will ever get it.

The danger in that, he said, is employers and insurers can use test results to discriminate even though the person might never develop symptoms of a disease.

Dianne Bartels, University’s Center for Bioethics’ associate director, said tests revealing the genes for family breast cancer or Huntington’s Disease “are the type of things that employers might hope not to pay for in the future.”

“Those are the (diseases) that people worry about, because once you have a disease you can be covered by disability. But prior to that, the question is Ö if you have a gene test, does it mean you have a disease?” Bartels said.

Opportunities to discriminate will grow, Bartels said, as medical science gains understanding of the genetic factors relating to things such as heart disease or diabetes.

Larson was the first speaker in a series of free lectures held by the University’s Consortium on Law and Values in Health, the Environment and the Life Sciences.

He also discussed possible ramifications of prenatal genetic testing and the testing of couples concerned they will pass on a genetic disease to their children.

He warned that society has yet to address the issue of what happens when parents discover their unborn child is susceptible to a genetic disease. He said this could lead to a new type of eugenics, a science which had an infamous record in the 20th century.

The term “eugenics” was coined in England by Francis Galton, a cousin of Charles Darwin, in 1883. It refers to selective breeding that encourages reproduction among “abled” people and discourages it among the “disabled.”

These terms, however, often have as much to do with society’s view of the person as medicine’s and might refer to mental, physical or behavioral problems.

“Biology may create a certain genetic condition, but only society can term it normal or unnormal, ability or disability,” Larson said.

Larson said criminals, epileptics, the mentally handicapped and the blind were groups often singled out and discouraged from reproducing by eugenic programs in the United States and Europe – sometimes by force.

In the United States, 32 states at one time had eugenic programs, leading to the sterilization of 60,000 mentally ill and retarded people, as well as some criminals and epileptics, Larson said.

He also cited a 1920s high school textbook that gives tips on selecting an able mate, and he showed clips from the silent film “Are You Fit to Marry?” In a sign of eugenics’ popularity in the early half of the 20th century, the film was endorsed by Hellen Keller.

Larson warned that society’s role in determining who is disabled is a dangerous aspect of eugenics. Advances in medicine constantly raise the bar for what is “normal” for everything from mental ability to physical appearance.

“What are going to be the new norms of society that are going to come about because of the potentials of genetic ‘tweaking’?” Larson asked. A growing number of people may be labeled “disabled” but do not consider themselves so, he said.

University law professor Susan Wolf touches on these issues in her health law class and a seminar in genetics and assisted reproduction. She said that while the Americans with Disabilities Act does cover genetic discrimination, even accounting for some of the social aspects of disability, it doesn’t go far enough.

Many states have adopted additional protection against genetic discrimination. Minnesota has statutes forbidding some forms of discrimination based on genetic information both in health and life insurance, as well as a statute that protects employees from their employers gaining access to genetic information that is not “genuinely relevant” to the performance of their job, Wolf said.

“This state is very active in the debate about ‘How do you create legal protections?’ ” Wolf said. “I think in some ways we are ahead of the game.”

Still, Wolf said neither the average person nor physicians have enough knowledge of the issues yet, which will prevent either legal or social advancement in dealing with the issue.

“Critical, first of all, is education on genetics. Genetic misinformation and mythology is fertile ground for abuse of genetics,” Wolf said.