July 1996

Genetics Is No Longer Tomorrow’s Health Issue

by Martin Ackley, Consultant for Health Policy

Genetic therapy and genetic engineering have far-reaching effects, and the time at which they will be felt on state health care policy and economics is not far away. Technology has advanced to the point where once-hypothetical questions now are practical quandaries. Genetic testing and profiling now can decipher whether a person—or an embryo—has the encoded characteristics of a debilitating or fatal disease.

Should doctors be allowed to genetically alter a fertilized egg that has been determined to have the characteristics of any number of diseases? Should parents be able to use this information in deciding whether such a fetus should be carried to full term? Would knowing that you are genetically determined to suffer from a disease such as Huntington’s Cholera change the way in which you live your life? Would society put a lesser value on your life and health care if it knew you eventually will get muscular dystrophy? Should parents be permitted to engineer a "perfect" child? These are some of the ethical, legal, and social questions that soon will be on the agenda of legislatures and public policymakers in Michigan and throughout the nation. They have been on the radar screen of the Michigan-based Council on Genetics and Society for nearly five years.

"It’s all these issues that society and research institutes are going to have to struggle with," says Bob Ortwein, executive assistant to the president at Ferris State University and a member of the Council on Genetics and Society (CGS). "My primary idea is to get across the point to policymakers and public policy thinkers that this council exists and has a variety of people that wrestle with a lot of these issues. Our emphasis is on surfacing knowledge and being a repository of information."

The 50-member council represents four state universities, genetics experts, philosophers, attorneys, researchers, ethicists, theologians, and the general public. Originating as the Genome Ethics Committee five years ago, the organization educates local groups and organizations, government and professional organizations, and health institutions about genetic issues; the council also conducts research.

"We’ve had increasing interest from policymakers in issues dealing with privacy/confidentiality and the use of genetic information in the insurance area," says CGS chair Toby Citrin, professor of health management and policy at the University of Michigan School of Public Health. He says the council’s role is to "pull together material on articles written and on what other states have done and to promote dialogue in which we will help illuminate the policy issues that are on the agenda of legislative organizations."

Community Dialogue to Drive Public Policy

With a grant from the National Institutes on Health, the council is establishing dialogues in seven Michigan communities: Detroit, Ann Arbor, Kalamazoo, Grand Rapids, Holland, Lansing, and Saginaw/Bay City. In these discussions, which begin this fall, participants will reflect on social genetic issues with the hope of reaching a concerted philosophy on how public policymakers in Michigan should best address them. Advisory boards in the communities are inviting a broad range of social, ethnic, business, religious, health, and interest-group leaders to participate in the local dialogues. Among the objectives of the project are to

• determine the moral and social values that each community sees at stake by advances in genetic information and technology,
• judge whether genetics is a matter of reproductive liberty and private choice that should be beyond public and professional regulation and control,
• decide whether important social values should constrain some of these personal choices, and
• determine the extent to which we have or could create, through rational dialogue, sufficient social consensus to shape feasible and fair social policies that balance differing values.

In each community there will be five dialogue sessions this fall; topics will range from personal and premarital genetic testing to embryonic testing and genetic justice. "The objective . . . is to come to a more refined, carefully analyzed, moral and political judgement in regard to genetics and reproductive decision-making," says community-dialogue organizer Leonard Fleck, Ph.D., professor of philosophy and medical ethics at the Center for Ethics and Humanities in the Life Sciences at Michigan State University. In the spring there will be six more sessions, "to determine to what extent genetics policy should be addressed by government or professional associations, like the medical society or hospitals."

Fleck and Citrin say the participants in the community dialogues will be a true cross section of each community and will include representatives of interest groups that intrinsically oppose tampering with natural life. "Relatively conservative or religious organizations certainly will want to make sure that the ‘voice’ of their interest is heard, and it ought to be," Citrin notes. "The whole idea of the dialogues is to enable those voices to dialogue with other voices, in a framework that is not as divisive and confrontational as is usually the case once we’re further along in the policy process."

A Kinder, Gentler Debate

Because the community dialogues are taking place before the issue of genetic therapy and engineering hits the front burner in the legislature, the Council on Genetics and Society hopes the discussions will elicit a calm and rational look at the matter. Citrin explains that this is part of a national movement (sometimes referred to as public judgment or rational deliberative democracy) that tries to get people at the grass roots level to wrestle with the complex issues being addressed by policymakers but to do so with dialogue rather than through interest groups battling it out in the legislative setting.

"People at the grass roots level can connect, learn the basic complexities of the issues, apply their values, understand where each other is coming from, and come up with a reasonable accommodation to each other that results in a set of policies that they feel will maximize values and minimize harm," Citrin says.

"If we can advance the policy-making process into a little more rational mode of dealing with issues like this, we’ll consider [our effort] a success. It’s not going to be ideal, and it won’t be perfect. But we think it’s going to be an improvement over the way we’ve been making policy in such areas."

He said the council is particularly interested in helping policymakers look "around the corner"— at research going on in areas in which the technology has yet to emerge. This will allow people to start considering the policy implications before interest groups and private industry become invested with the technology to the point where there is incentive to use it regardless of the social or ethical ramifications.

The community groups naturally will have a vested interest in the policies that come out of the process, and the council hopes the interest will be sufficiently strong to motivate the groups to advocate those policies to legislators and professional and institutional organizations.

These community dialogues will be an intriguing test of whether neighbors holding diverse beliefs, values, and morals can sit down, consider one another’s point of view, and come to consensus on policy direction. In the best of all worlds, the legislature will accept this consensus as the will and wisdom of the people of the state and put aside the sanctimonious and noisy pressures of the horde of interest groups that will be championing their own viewpoint.