Monday, April 15, 2013

The human genome: dignity or commodification?

Today, the Supreme Court will hear oral arguments in Association for Molecular Pathology v. Myriad Genetics, in which the principal question is whether human genes -- here, genes indicating a predisposition to ovarian and breast cancers -- can be patented. Like several other cases this term, this one seems to require the Court to venture into uncharted waters, as Justice Kennedy said last month in the same sex marriage cases.

But in reality, the issues raised here have been considered by other constitutional courts around the world.  And as is true with the waters of same-sex marriage, voting rights, and affirmative action, the legal status of the elements of human development has not only been charted in other countries; it has been defined and analyzed in varied contexts, and often by reference to the concept of human dignity.  Two cases illustrate how the constitutional value of human dignity has helped to frame the legal questions in similar cases.

In 2002, the Canadian Supreme Court decided that the genes of higher life forms were not patentable subject matter because they weren't encompassed within the statutory definition of "manufacture" or "composition of matter" -- the very question at issue in the Myriad case. Following the guidance of a scientific advisory body (the Canadian Biotechnology Advisory Committee), the Canadian Court said that even if patents are permitted for some higher life forms, "human bodies at all stages of development should be excluded" because of the "universal principle of respect for human dignity, one element of which is that humans are not commodities." The Court explained that "'what is disturbing about objectifying a person or organism is not so much the exchange of money as it is the notion that a subject, a moral agent with autonomy and dignity, is being treated as if it can be used as an instrument for the needs or desires of others without giving rise to ethical objections.'" (citation omitted).  The use of even a part of a human being for someone else's purposes violates the first principle of human dignity -- that humans can not be used as means to someone else's ends.

Brazil's Federal Supreme Tribunal has considered the bounds of medical research in a different context . In 2008, the Tribunal upheld the nation's biosecurity law, which permitted research on embryonic stem cells, against a challenge that such research violated the constitutionally protected right to life. The court said that such research was permitted because it violated neither the right to life nor the principle of human dignity.  In fact, such research, the court said, actually furthers human dignity insofar as it can lead to cures for diseases and conditions that diminish or challenge people's ability to live with others in dignity.  "There is no offense to the right to life and human dignity," the court said, "because research with embryonic stem cells (whether created biologically or for other purposes) signifies a social celebration ("celebração solidária") of life and breath for those who find themselves barely able to exercise in a concrete way, their inalienable right to happiness and to live with dignity."

Indeed, the court said, the biosecurity law dealt with "a set of norms that assumes the intrinsic dignity of all forms of human life, or of life that has that potentiality."  Here, the court was thinking not only in technical terms about the conduct of the research itself, but in very practical terms about the value that advances in medical knowledge have for those who depend on it for their dignity, their enjoyment of life, and indeed their very survival.

It would be refreshing to see the United States Supreme Court follow suit, and recognize the implications of its decision for those whose survival and dignity depend on advances in medical research and access to the most effective diagnoses. 

2 Comments:

Blogger Patrick S. O'Donnell said...

Erin,

In the description of the ruling in the Canadian Supreme Court case you conclude that "the use of even a part of a human being for someone else's purposes violates the first principle of human dignity -- that humans can not be used as means to someone else's ends." But that cannot be true, as humans, and even parts of humans (e.g., their intelligence, their cells, their organs, their blood, etc.) are routinely used as means to someone else's ends. We should keep in mind the original Kantian formulation of this principle, defined by Allen Wood as the Forumula of Humanity as an End-in-Itself: "So act that you use humanity, whether in your own person or that of another, always at the same time as an end, never merely as a means." So, it's not that human beings cannot be used, in whole or part, as means to someone's ends, for surely they/we are routinely so used, but rather "never merely [or solely] as a means."

I may have more to say about this particular Supreme Course later but want to note for now that the Court rarely, at least for some time now, looks to cases outside the U.S. in its reasoning, and certainly not in the first instance. And its handling of bio-scientific/bio-technology issues as they relate to ethics and morality is not encouraging, as in Diamond v. Chakrabarty (1980), where the Court affirmed the patentability of biolgogical organisms with the rationale (excuse) that they were in fact "human-made." Heretofore, living things were not deemed patentable subject matter. To be sure, this did not involve genetic material but bacteria, but alongside the commodification of plant genetic resources and the apparent widespread use of post-mortem body parts we see the beginnings of a trend of deference to Big Science and the "Promethan Promises of the New Biology" (Hilary Rose and Steven Rose). Think too of the story of Henrietta Lacks (1951): cancerous cells from her cervix were removed sans her consent and cultured, proving to be a major research boon. Under the name HeLa, cell lines initially freely distributed to researchers were commercialized (to this day, Lacks' 'impoverished family' has 'received neither recognition nor financial compensation'). Consider too, again with some relevance, the case of Moore v. Regents of the University of California (51 Cal. 3d 120), "a landmark Supreme Court of California decision filed on July 9, 1990 which dealt with the issue of property rights in one's own body parts. John Moore underwent treatment for hairy cell leukemia at the UCLA Medical Center under the supervision of Dr. David W. Golde. Moore's cancer was later developed into a cell line that was commercialized. The California Supreme Court ruled that Moore had no right to any share of the profits realized from the commercialization of anything developed from his discarded body parts." More might be said, but this will have to suffice for now.

4/15/2013 9:19 AM  
Blogger Patrick S. O'Donnell said...

Erratum (second para., first sentence): I may have more to say about this particular Supreme Court case later....

4/15/2013 9:21 AM  

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