Genetics - And Genetic Legal Problems: Can the Legal System Cope With Novel Bioethical Challenges?

9 Pages Posted: 9 May 2016

See all articles by Barbara Pfeffer Billauer

Barbara Pfeffer Billauer

Institute of World Politics; International Program in Bioethics, U. of Porto; Foundation for Law and Science Centers, Inc.

Date Written: May 9, 2016

Abstract

Genetic testing has become more frequent and necessary, both for medical diagnosis and treatment, and now for prosecution of legal claims in establishing causality. But what happens to unrelated information gleaned from these tests? What onus does such knowledge confer on the recipient? In the recent (and ongoing) case of Chadam v. Palo Alto School District, the Chadam’s learned of a genetic mutation possibly predisposing in their son for cystic fibrosis (CF) in an unrelated incident (both in time and subject matter). Thereafter, on registering their son in a new school they divulged the condition, believing it to be confidential. CF, a genetic disease, is not contagious, but in active form it may pose a risk to others suffering the disease. Because the genetic predisposition was misunderstood as posing an actual threat to two already sick children previously enrolled, the parents of these children (Mr and Mrs X) were advised of the Chadam boy’s condition. They promptly demanded the Chadam boy be expelled – and he was – publically and in front of his classmates.

The Chadams sued; their complaint was dismissed for failure to state a cognizable claim. It is now on appeal.

The case raises legal, medical and bioethical issues including privacy, misunderstanding of genetic transmission by the school board which prompted their decision, lack of concern for the sensitivities of the Chadam boy and applicability of the American Disabilities Act. Conspicuous by its absence is the failure to plead the California Genetic NonDiscrimination Act (CalGina) as a basis for relief.

The case highlights the novel legal challenges that accompany advances in medicine (and especially genetics). Are lawyers and judges up to it, both in terms of understanding the medicine and in structuring complaints to best protect and advance their clients’s rights?

Keywords: genetic testing, bioethics, right of privacy, privacy, cystic fibrosis, cf, CalGina, ADA, discrimination, genetic discrimination, choice of law, medical error, genotype, phenotype

JEL Classification: D221, D63, D74, D78, D81, I18, K32

Suggested Citation

Billauer, Barbara P., Genetics - And Genetic Legal Problems: Can the Legal System Cope With Novel Bioethical Challenges? (May 9, 2016). Available at SSRN: https://ssrn.com/abstract=2777607 or http://dx.doi.org/10.2139/ssrn.2777607

Barbara P. Billauer (Contact Author)

Institute of World Politics ( email )

1521 16th St NW,
Washington, DC
United States
+1 202-462-2101 (Phone)

International Program in Bioethics, U. of Porto ( email )

Rua Dr. Roberto Frias
4200-464 Porto
Portugal

Foundation for Law and Science Centers, Inc. ( email )

1020 16th Street NW
Suite LL1
Washington, DC 20036
United States
972 54 344 6055 (Phone)

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