Diving into the gene pool : a user's guide to the new genetic medicine / words, Gail Vines.

  • Vines, Gail.
Date:
1995
Catalogue details

Licence: Attribution 4.0 International (CC BY 4.0)

Credit: Diving into the gene pool : a user's guide to the new genetic medicine / words, Gail Vines. Source: Wellcome Collection.

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    WHO SHOULD KNOW WHAT ABOUT WHOM? The uncertainty of today's genetic tests creates hidden complexities. Genetic testing of any kind needs to be accompanied by extensive genetic counselling and social support in screening programmes, so that people can fully take on board what the test can tell them, and what it can't. More research is needed to discover what people want to know, and with what kinds of support. A landmark screening programme in Wales for newborn children with Duchenne muscular dystrophy has proved popular even though there is no effective treatment for this muscle- wasting disease. The key is to give bad news in the best possible way, say the researchers - backed up by counselling, expert medical attention and social support. There is a danger that cheap and cheerful screening tests with no face-to-face social support may proliferate: already, a commercial enterprise offers carrier testing for cystic fibrosis through the post. Do MOST PEOPLE want genetic tests? The evidence is equivocal to date. Before a test for Huntington's became available, many people at risk said they would want to know. But in the event, remarkably few have taken up the offer. On the other hand, women with a family history of ovarian or breast cancer seem to welcome genetic tests. Each disease may present a different picture, as the complexities of genetic medicine become apparent. As all forms of genetic testing become more widespread, there are real fears that discrimination against the genetically stigmatised may surface. Already, insurance companies have refused to rule out the possibility that they would penalise, or even refuse to insure, people found to harbour genetic defects that might make them ill in the future. The issue of privacy and access to medical records is also a matter of heated debate. Legislation may be needed to safeguard human rights in an era of genetic diagnosis. The genetic lottery is an apt metaphor: each of us inherits a unique complement of genes, on loan from the human gene pool. Increasingly, we are in the novel position of seeing just how we have fared in this game of chance. In the future, medical research may find ways of altering our genetic makeup, or the ways our genes work, to make us all healthier. But other scenarios are also imaginable. We need to act now to ensure that our growing knowledge of genetic mischance does not fuel new forms of social discrimination. If we can tackle these important issues head on, and use the information wisely, then advances in genetics have the potential to improve both our understanding of what causes disease and our ability to develop new therapies.