Besides reporting that 16,534 gene sequences have been madeavailable on the World Wide Web (see BioWorld Today, Oct. 25, p.1) the current issue of Science carries in its "genome issue" section apaper titled "Genetic discrimination: Perspectives of consumers."
It raises a warning flag that testing and screening individuals at highrisk of inheriting or passing on genetic diseases cuts both ways.Besides alerting people harboring potentially pathogenic genemutations, as in familial breast cancer, unwarranted disclosure ofsuch genetic data exposes them to severe social risks at the hands ofinsurers and employers.
E. Virginia Lapham, the article's first author, is director of socialwork at the University of Georgetown Child Development Center inWashington.
She and the article's senior author, Joan Weiss, director of theAlliance Of Genetic Support Groups, conducted confidentialtelephone interviews nationwide with 332 men and women fromfamilies with one or more genetic disorders. The informantsrecounted their adverse experiences in applying for life insurance,health care coverage and employment.
Among the paper's salient conclusions:
* ". . . the availability of affordable health insurance often determineswho does and who does not have access to health care. For manypeople with genetic disorders, health insurance may mean thedifference between life and death."
* Refusal to be tested for fear of genetic discrimination "eliminatesthe opportunities of individuals to learn that they are not at increasedrisk for the genetic disorder in the family, or to make lifestylechanges to reduce the risks or seriousness of the condition."
* "It may also affect the number of people willing to participate inscientific research."
One case history in point: A prospective employer turned down aman for a job when his physician noted in his medical recordsusceptibility to a sex chromosome disorder. "The employer . . .knew it was illegal to use the diagnosis in the hiring decision, andtold the applicant that he would deny the conversation in the future ifasked."
The Science paper made the point that "Issues of geneticdiscrimination in employment and insurance have become moreurgent as a result of the genome project."
During a press conference Thursday at Georgetown UniversityHospital announcing results of her survey, Lapham read a messagefrom molecular geneticist Francis Collins, director of the NationalCenter for Human Genome Research: It began: "Today's astoundingadvances in genetics will result in better medical care only when thepublic is secure in their use."
Lapham told BioWorld Today: "These consumers [at-risk people sheinterviewed] are very supportive of the Human Genome Project,beyond merely `just find the gene for my disorder.' Thebiotechnology research community," she pointed out, "needs to knowthe importance of preserving the privacy and confidentiality ofgenetic testing data from insurers and employers."
Insurance companies, she observed, "also say they support privacyand confidentiality _ that they will keep from others."
The other side of that coin _ the insurance industry's viewpoint _will be presented next week in San Francisco at the 46th annualmeeting of the American Society of Human Genetics. Its title:"Coverage of new genetic technologies: What matters to insurers?"
Its authors, at Johns Hopkins Medical Institution in Baltimore,canvassed 751 insurance companies as to how they would makecoverage decisions for cystic fibrosis screening and gene therapy, andbreast cancer testing.
Results of their poll indicated that "few insurers have developedpolicies for coverage of selected new genetic technologies. A greaterlikelihood of coverage," its authors will suggest, might come aboutthrough "improvement in the sensitivity of testing, limiting tests topopulations at highest risk, increased public demand, endorsement oftechnologies by professional societies, and reduced cost." n
-- David N. Leff Science Editor
(c) 1997 American Health Consultants. All rights reserved.