January 29, 2008
Technical progress constantly challenges existing laws. We have looked in the past to property, censorship and discrimination and called for better laws. Not that we blind ourselves to the difficulty of the task. Indeed no improvement can last unless we question anew our deepest moral beliefs.
Two months ago we asked whether Man is but a bill of body parts inventory. We are glad to recommend to our readers the recent contribution of Leonard Glantz, Patricia Roche and George J. Annas on this subject (*). Taking seriously, as we did, the challenge implicit in Michael Crichton's latest novel (1), the authors carefully review three actual law cases relevant to the handling of human tissue. They reveal the confusion created by judges who had to reach a decision while lacking guidance from proper precedents. "With the advent of DNA analysis", their concluding remarks wisely stress, "the property question has been joined with a privacy question". We could not agree more.
Data privacy, eprivacy in short, is the cornerstone of this site because our developments enable an entirely new perspective, true personalized interactions with true confidentiality. This is significant because privacy has become so central to our Information Age. By providing the legal perspective, Leonard Glantz and his co-authors balance our more technical bent. Effective action however needs to be grounded on moral concepts, especially when dealing with healthcare. Let us take their contribution as a good starting point.
The authors fault the Office for Human Research Protections for a rule abusively turning all human tissue donors into research subjects (2). They argue, "the collection of money, equipment, personnel - or tissue samples - in the contemplation of research [...] is not research". The rule is not without its justification though. It is intended to protect individuals and the mere collection of tissue samples carries a privacy risk (3). When eprivacy laws are weak, protecting against privacy risks by boldly lumping them together with personal health risks is better than no protection at all.
More dangerous would be to think privacy is the only difficulty to tackle. Human tissues from living donors are a privacy risk in view of their carrying the ultimate identifier of a unique person, the donor's DNA. By this token, are fertilized human eggs to be the only human tissue from a living donor left unprotected because they carry nobody's DNA? Needless to say, this reopens a highly charged debate about what is a living human being. Our motto, Privacy, Identity, Responsibility, stresses questions of Privacy cannot be dissociated from questions of Identity.
Past legal decisions have sought to prevent ownership of human tissue from "hinder[ing] research". Gifts of tissue are made to promote "medical research". The authors implicitly assume "research" to be a well defined notion. This notion however confuses an activity, carrying experiments, and a result, new information acquisition. There is nothing wrong to seek and capture the economic benefits of research activities. But as far as the general public is concerned, non for profit academic and health institutions have quietly changed their standard of ownership from public to private, trumping scientific paper submission with patent application. Aren't gifts made under willful misrepresentation by the recipient automatically invalid?
Read Andrew Vickers's complaint about the reluctance of scientists to share cancer data among themselves (**)(4). First they swindle the widow out of her mite "in the name of research", then they fight on how to divvy up the collection. Some cleansing seems in order. Incidentally Karen W. Arenson reports that the Senate Finance Committee is investigating "the nation's 136 wealthiest colleges and universities" (***). Even irrevocable donations cannot erase Responsibility, our motto's last word. In jest I compared Yale to an abbey. Is the Senate taking a cue from Henry VIII (5)?
- (*) ..... Rules for Donations to Tissues Banks - What Next?, by Leonard Glantz, Patricia Roche and George J. Annas
_____ (The New England Journal of Medicine) - January 17, 2008
- (**) .. Cancer Data? Sorry, Can't Have It, by Andrew Vickers (New-York Times) - January 22, 2008
- (***) Senate Looking At Endowments As Tuition Rises, by Karen W. Arenson (New-York Times) - January 25, 2008
- (1) see Next, by Michael Crichton (Harper Collins) - 2006, 431 pages
- (2) see the definition of human subject by Rule 45cfr46.102(f), in "Protection of Human Subjects" (Department of Health and Human Services)
- (3) there is in reality a whole risk spectrum. Without any other information, one can only compare DNA to verify whether a human tissue sample comes from a specific individual. It would take considerable resources and wide police powers to spot the right person in a general population. Tissue samples however may be linked to other medical information which can quickly narrow down the search, much as anonymous AOL search users were tracked by reporters last year.
- (4) as the author acknowledges, privacy considerations do make sharing such data more cumbersome
- (5) see the Dissolution of the Monasteries in the Wikipedia