EDST 391 Ethics & the Human Genome

Name:
Date:
"Calendar"

Assignment for Day 25

Legal rights of participants (and their families!) in genomic studies and gene patenting

Dan’s Day!

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Readings—all short:

One section:

· Human Genome Project page on Genetics and Patenting (the section called “Why Patent?”)

Short news articles:

· "Parents sue over incorrect prenatal genetic test results," PHG Foundation, 4/24/06.

• "Disclosure of genetic tests for health insurance: is it ethical not to?" The Lancet, 363(9406), 31 January 2004, pages 395-396.
• French Doctors Puzzle Over Gene Ownership, British Medical Journal, 1994;308:873-874 (2 April)

Small piece of this one:

· This article was mentioned and briefly discussed early in the course. Please focus now on the paragraphs, beginning on the first page, where family members report their concerns about these individuals making their genomes (and hence their families’ genomes) public. This discussion starts on the first page. "The DNA age: Taking a peek at the experts' genetic secrets", New York Times, October 20, 2008.

Video: Watch the first ≈20 min. This is about the ownership of genetically modified crops (one side of a legal case), but think about the general principles involved.

· Documentary on Patenting Genes (hulu.com)

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Thinking assignment:

• Physicians, researchers, and lawyers still hotly debate the question of who owns the genetic material in current genetic databases. But what about the people who donated their genes in the first place? They gave up property rights to the genes they donated, but how far can their rights to donate be taken? Do they have an unfettered right to donate some of their genes?—presumably yes. What about their entire sequence of DNA?—possibly. But “donating” an entire living person to scientific research goes against almost everything we’ve discussed thus far, so where should we draw the line on permissible donations?
• Gene patenting has established the principle that genes can be owned as property. When we donate genes, we essentially give up any property rights we have in them. But if our genes can be owned, do we have the right to sell them? We might oppose the black-market sale we observed in Gattica, but where should we draw the line?

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