The Right to Bad Genes

Genetic engineering is just in its earliest tinkering stage, but it is already seen both as a great medical hope and a bugaboo. By learning the secrets of the genes, science is increasingly able to alert couples who run an unusually high risk of passing on crippling defects; sometimes a warning is possible even before children are conceived. Tests can also discover disabilities in the unborn as well as in infants and young children before symptoms appear.

Example: if both parents carry the genes for Tay-Sachs disease or sickle-cell anemia, there is great danger that their children will actually get the disease. Many geneticists and physicians are therefore enthusiastic about widespread genetic screening. They also support a new Massachusetts law--not yet put into practice--that would make sickle-cell examinations a requirement for school admission.

Others, however, argue that science and society must go easy not only in interfering with the genetic process, but even in mass screening. A 24-member team of scientists, lawyers and ethicists has been examining this question with the Institute of Society, Ethics and the Life Sciences at Hastings-on-Hudson, N.Y., for the past year. Now, in the New England Journal of Medicine, the group endorses the principle of helping people to make "informed choices regarding reproduction." But the authors are concerned that large-scale testing could violate people's rights to privacy and freedom of choice. Specifically, they argue that:

> There should be no attempt to impose a standard of genetic normality on any segment of the population. Virtually everyone carries a small number of harmful recessive genes. To eliminate these from the gene pool might require partners who both have similar "bad" traits to avoid parenthood entirely.

^ No program should be made compulsory. "There is currently no public health justification for mandatory screening for the prevention of genetic disease. The conditions being tested for in screening programs are neither 'contagious' nor, for the most part, susceptible to treatment at present." People, the report says in effect, have the right to bad genes.

-- Care should be taken to safeguard the privacy of participants in screening programs. The information obtained should be made available only to the individuals involved and their physicians. Otherwise, people might be stigmatized socially, and even perhaps denied life and health insurance.

Most doctors agree that guidelines are necessary, but some find the Hastings rules too tight. They argue that once a high-risk group is spotted--such as Jews of Eastern European descent who are vulnerable to Tay-Sachs disease--all its members of child-bearing age should be tested.

They also believe that information gained by screening should be passed on --to blood relatives, for instance, who might then be persuaded to have examinations themselves. In an editorial accompanying the Hastings report, Boston's Dr. John Littlefield suggests that the traditional, confidential patient-doctor relationship might be less important than people's "right to know about the risks that they run, whether infectious, toxic or genetic."

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