Bioethics, Genetics and Legislation.

Bioethics, Genetics and Legislation
by Dr. Carol Barash.

I would like to comment on what I perceive as an unmet need in the realm of bioethics and genetics; namely the need to develop an ethical framework which applies to a broad array of genetics-ethics issues not presently or possibly governed by legislation.

1. Although there is state and federal legislation, and international guidance, intended to protect against inappropriate uses of genetic information, including genetic discrimination, which is arguably the most salient form of misuse, existing legislative solutions are piece meal, ad hoc, and will inevitably fail to solve the breadth of problems.

2. Despite even good legislation there will always be areas ripe for the value laden decision making in areas beyond the purview of law.

3. Presently, there are numerous venues wherein institutions are free and uninhibited to determine a person's opportunities/benefits based on judgements about the worth of that individual which in turn are based on judgements about that person's genetic status. This decision making authority is value laden in ways unchecked by law thus providing them with significant capability to exclude.

For example, an adoption agencies ability to decide that a couple where one has a genetic risk for late onset disease is permitted to only adopt a child having a risk for late onset disease raises not only serious social policy questions about whether children with genetic risk factors are entitled to parenting only by individuals considered deficient to parent 'normal' children but illustrates the potential for ethically suspect decision making about the meaning of genetic information. And although adoption issues arguably effect a disproportionately small number of people, this issue is appropriate to worry about both on its own merits and because of the outstanding significance such types of decisions have on the people involved.

4. Genetic discoveries are making perspicacious the unavoidable need to make tradeoffs which means deciding against ethically defensible interests and values at stake. Our ethical tools for this task are arguably not up to the task. Explicit deliberation about the meaning and desirability of genetic risk burdens is clearly ethically sensitive if not only because the stakes are frequently unavoidably high.

5. Appropriate framing of genetic risk questions is central to ethically defensible public policy. Competing ways of framing risk management issues- as applied to genetic risks- can yield conflicting decisions, thereby promoting widely different views of equity or fairness. For example, results from the DOE study of genetic discrimination revealed inconsistent rationales underlying exclusionary decisions. In particular, insurance decisions were arguably premised on prudence, whereas blood donation exclusions were arguably based on presumed moral authority. In the latter, when blood letting is a treatment, the giving of blood was understood as motivated by self-interest and prohibited on the grounds that it was not altruistic.

6. Good social policy should be ethically defensibe and ethically consistent

7. From an ethical point of view we want societal decisions about the appropriate use of genetic information to hinge on considerations which defy monetization and which promote social goals other than only maximizing utility. Yet, the potential for such decisions to be based on utility or prudence is great.

I therefore suggest that the Commission acknowledge the need for a framework for ethically defensible decision making about the management of genetic information in areas not governed by law and that the Commission reccomend the development of such a framework that could serve as a guidance document and which could be disseminated to institutions involved in decision making where these issues arise.

Such a framework would:

1. permit explicit consideration of otherwise hidden normative assumptions

2. permit explicit deliberation about the meaning and significance of 'genetic' risk so as to prevent overvaluing 'genetic risk' unsupported by scientific evidence

3. enables us to explictly acknowledge the inevitable need to make tradeoffs

4. and draw attention to relevant ethical variables and in so doing both minimizes a false dependency on science as the purveyor of just decisions, and foster more responsible decision making

Carol Isaacson Barash, Ph.D., Principal
Genetics, Ethics & Policy Consulting.
317 Lamartine Street
Boston, MA USA
cbarash@tiac.net
617-522-0845
fax:617-983-5465

Briefly, I am Dr. Carol Isaacson Barash, a trained philosopher who has spent the last five years in the field of human genetics, first as Director of a Department of Energy funded study of genetic discrimination and now as founder and principle of a Genetics, Ethics & Policy Consulting, a small firm dedicated to helping institutions to optimize the benefits of genetic technologies through applied research, policy and ethical analysis, education, and product development.