The University Record, March 18, 1998

State's genetic privacy commission faces delicate task

George Brewer, professor of human genetics, holds an electrophoresis gel that shows DNA sequencing. One of the issues the committee will address is whether data that comes from DNA sequencing should be held in a data bank. U-M Photo Services file photo by Bob Kalmbach

By Rebecca A. Doyle

Privacy, discrimination, ownership, collection, use and storage of DNA samples are the issues that are being tackled by the Michigan Commission on Genetic Privacy and Progress, appointed by Gov. John Engler in September 1997 to "formulate policy recommendations on protecting genetic information and regulating its use.

"New genes are being identified at the rate of two per week," Engler noted in the executive order forming the commission. He charged the 11-member commission to present recommended policies to his office by Nov. 15, 1998.

The group is chaired by Edward Goldman, Health System attorney.

"Science is moving forward and the law is trailing behind," he says of the issue of genetic privacy. "There is a need for science to be unfettered. There is a need for individual privacy, there is a social need, and there is a need for rules that produce understandable outcomes." All these needs can conflict with each other, making the commissionĖs job a difficult and delicate one.

Goldman talks about the issues by example, citing the serial rapist case of a few years ago as one. DNA samples were collected from citizens, and police held the samples after those who gave them had been cleared. Police would like to be able to keep such evidence on file in a DNA databank, Goldman says, much as fingerprints are kept on file. But there are questions about individual privacy and ownership of the samples that must be resolved before there is clear policy on whether the files or the DNA samples themselves could be legally kept and used as evidence in future cases.

Goldman says that one of the outcomes of the O. J. Simpson trial was that most people don't believe that DNA matching is as reliable as it really is. Matches can be made with 99 percent certainty, he says. Lawyers in the Simpson trial made the public think that samples could be easily contaminated or switched and that the resulting evidence was inconclusive. In fact, DNA matching is much more reliable than fingerprinting or any other current method of identification, he says.

When the group begins to discuss possible state policy and guidelines for genetic research and experimentation, "I think they will find there are competing social values," Goldman notes. For instance, most newborns are tested for some set of diseases as a matter of course so that treatment for them can be given immediately. It is a matter of social policy, he said, that this be done so treatment can begin without delay. In some cases, delay of treatment could mean the child would be permanently and irrevocably damaged. But do hospitals then have the right to keep the samples in a databank? Is your DNA your individual property? Can the sample be used for other purposes?

DNA does not change as a person ages, as do some characteristics such as face shape and hair color. The same DNA that is tested at birth could be the DNA that matches a criminal to the crime 25 years later or that identifies one victim of a plane crash 50 years later.

Scientific goals and public sentiment may conflict, for instance, on the issue of cloning. "Science would say, 'Why not do it? We may learn important information,'" he notes. "But there should probably be restrictions on the results and this leads to a tension between pure science and social policymakers.

"That is a healthy tension," he said, noting that the important thing is that all views be heard. That is why Engler has appointed commission members from so many different areas in science, medicine and public policy.

The commission meets formally once a month, and last week worked on definitions of many of the terms involved in genetic research. Next month, Goldman says they will start to discuss proposals they could take to Engler and the state Legislature.

"I was shocked at the amount of reading there is, the amount of material that has already been published," Goldman said. "I have and I think everyone on the commission has spent a great deal of time reading."

Between formal meetings, the group discusses issues and next steps in informal conferences, telephone conversations and e-mail messages.

Members of the commission, in addition to Goldman, are David J. Aughton, chief, genetics division, William Beaumont Hospital; Shirley Bach, professor of philosophy, Western Michigan University; Howard Cash, president, Gene Codes Corp.; James K. Haveman, director, Department of Management and Budget; Robert Lentner, president, Mid-Michigan chapter, Huntington's Disease Society of America; Thomas Meyer, vice president and general counsel, Jackson National Life Insurance Co.; Elizabeth Petty, U-M assistant professor of internal medicine and human genetics; Nanette Lee Reynolds, director, Department of Civil Rights; Sonia Suter, U-M visiting professor of law; and Helga Toriello, director, genetic services division, Butterworth Hospital.