Genetic privacy makes strange bedfellows

Article Abstract:

Two men who are often found on opposites sides of issues concerning genetic engineering recently supported the same piece of legislation. Jeremy Rifkin, an activist who opposes many aspects of genetic engineering, and W. French Anderson, a researcher in the area of gene therapy (inserting new genes into the cells of people with genetic diseases), both favor a bill to protect the privacy rights of people regarding their genetic information. The legislation, put forth by Congressman John Conyers, would prevent agencies from releasing genetic information without written consent of the individual, except in certain situations, with criminal penalties for unauthorized release. Anderson's support is based partly on his hope that the bill will promote public discussion of the ethics of genetic privacy. Rifkin would want even stronger curtailment of the potentially destructive effects of 'leaked' genetic information on the person's employment, educational opportunity, or insurance; Conyers's bill only applies to governmental agencies and institutions that receive federal funding. Evidence exists that people have already been unfairly stigmatized because of the results of their genetic tests. Paul Billings, a researcher who supports the bill, criticized the National Institutes of Health and the Department of Energy for not acting sooner on behalf of privacy. Rifkin predicts the growth of a strong genetic rights movement in the 1990s; he is gearing up for a major fight to get more inclusive privacy legislation passed. Opposition is anticipated from trade associations and some industries. (Consumer Summary produced by Reliance Medical Information, Inc.)

Laws, regulations and rules, Political activity, Beliefs, opinions and attitudes, Privacy, Right of, Right of privacy, Rifkin, Jeremy, Anderson, W. French, Conyers, John

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Religion and gene patenting

Article Abstract:

The disagreements between scientists and religious leaders may not be as divisive as the media suggests. Although representatives of 80 religious bodies signed a statement opposing the patenting of animals and human body parts, religious leaders have shown strong support for science for centuries.

Column, Patent law, Religion and science

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Scientists attacked for 'patenting' Pacific tribe

Article Abstract:

A patent on a virus-infected cell line found in the Hagahai tribe has caused a furor in the media, even though researchers agreed to share patent royalties with the tribe. Scientists claim that their work has been misrepresented as patenting a human being.

Intellectual property, Human genetics, Indigenous peoples, Cell lines, Papua New Guinea, ETC Group

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