Macro Debates in Micro Bites
Hong Kong, 2005, SARS epidemic. Must you report your symptoms if as a consequence you will lose you job? As a doctor, do you treat patients suspected of having SARS despite the high rate of infection? Can the government release the names of the neighborhoods that have been hardest hit to the public? These are some of the ethical quandaries considered in “The SARS Epidemic in Hong Kong 2003: Interplay of Law, Medicine, and Ethics” by Edwin Hui, a professor at the University of Hong Kong, in a new anthology, The Nexus of Law and Biology, edited by Barbara Ann Hocking.
I looked at this volume, slim but full of subjects for thought, from the perspective of what it offers lay (non-lawyer) denizens of the bioethics neighborhood. That may seem to be a peculiar burden for a book with specialized articles on international common law and statutes (and sometimes correspondingly dense prose), but a fair standard given that the editor and some of the authors expressly frame that accessible usefulness as a goal. The law, as the articles emphasize in different ways, is not just syntax for practitioners but also how society talks about justice and power. I am not qualified to comment on how fair the selections are with regard to the law, but the book has prompted me to think more – and differently – about the issues raised, so as added value to current bioethics debates, the book succeeds grandly.
The anthology provides a snapshot of the current intersection of biology and law, be it environmental liability for the introduction of genetically modified organisms (GMOs), consent in genetic research, or protocols for biological warfare. As is inevitable, some of the articles are more concise and less encumbered by legal jargon than others. As the Australian judge Michael Kirby writes in his introduction, “The essential link [between the articles] is the mysterious phenomenon of biological life, made even more puzzling when consciousness, intelligence and the moral sense emerge in the higher life forms.”
For those looking more to the law flavoring, I particularly suggest this book if your focus is on currents outside of United States shores. Editor Hocking is an assistant law professor at the Queensland University of Technology and the University of Tasmania, and the anthology accordingly focuses more on international, British, and Australian law than on the American legal system. Christopher Rodgers, a professor at the University of Newcastle, UK, in his article “Mediating Law and Biology?,” indeed specifically maligns the United States for not signing the Cartagena Protocol on Biosafety, for that leaves as governing international law the looser and less extensive Sanitary and Phyto Sanitary (SPS) agreement of the WTO to assess the risk of GMOs.
One of the strongest pieces in the anthology is “Indigenous Peoples and Genetic Population Research: Reflections on a Culturally Appropriate Model of Indigenous Participant Consent” by Helena Kajlich, a PhD candidate at the University of Tasmania. Kajlich argues that current genetic population studies must obtain a culturally resonant form of consent if indigenous peoples are to participate voluntarily and with full information in genetic research. Kajlich also contends that researchers should only be able to harvest genetic data if they obtain “group” permission; taking samples from individuals when the group has not given approval violates the consent of the group to be subject to research. The article is concise, presenting four different consent methodologies and evaluating the pros and cons of each. Kajlich urges that genome research include ongoing consent – consent at every step of the process – and “creative and innovative methodologies by which indigenous peoples can maintain, control, protect and develop their biological resources.” Kajlich engages the reader to examine closely the precise relational tie between harvesting of medical information and its uses and the role that consent should play at each iteration, and draws the reader’s attention to the element of group approval.
Other pieces are touch more esoteric if no less intriguing. In “A Proposal Based on ‘The Tragedy of the Commons’: A Museum of Bioprospecting, Intellectual Property Rights and the Public Domain,” Joseph Henry Vogel, a professor at the University of Puerto Rico, argues that a museum dedicated to discussing biological innovations and legal rights would allow the public sphere to become a domain for discussing these issues – that is, the public would be informed and able to participate in an ongoing discussion about bioethical dilemmas. He lobbies for Puerto Rico as an ideal place to build that museum because of its scientific research, lack of another science museum, bilingual citizens, and “pristine” natural reserves, among other factors. But does Vogel really think that could happen? Vogel does acknowledge that there is a “bricks and mortar” (read dollars) component to a museum. While that challenge remains, he raises a pressing problem: how can we create relevant and meaningful discussion in the public sphere about these issues? As we are seeing with the current healthcare debate in the U.S., these matters tend to become distorted in the media without the type of reflection to which this book aspires.
For a book which covers plenty of issues, a key is the organization of the table of contents, index, and bibliography, so that after an idea is implanted in the reader’s conscious it is readily recallable. On this, this volume does well.
But therein lies the rub in this anthology: for whom will this book find its best use, either initially or as a reference for the future? Would an ordinary citizen not professionally involved in some way with bioethics likely be able to understand this book? No, not least because of the legalese in some of the articles. Yet many of the authors in this anthology admirably advocate public debate about these issues. Hocking and Vogel attempt to harmonize the academic nature of the anthology with more democratic goals in the last chapter in the anthology, appropriately named “Shuffling the Law and Biology iPod,” in which they name various novels, plays, and movies that provide a window into cultural perception of biological development and its ethical implications. Popular media, they suggest, seems to be the only way to connect with larger swaths of population. Moreover, the anthology solely deals with traditional Western notions of the individual and of the role of law. Except for the article on consent, there is no mention of other religious and cultural contributions towards achieving international standards of ethics.
Yet here is a good book that raises issues of regulating technology, the physician-patient relation on an individual and community scale, and forming global ethical principles in the face of economic, religious, and cultural differences. As Justice Kirby concludes, “To do nothing is to make a decision.” Until these debates can be heard across spectrums, however, the ideas and critiques here of current systems of law for dealing with new biological issues will remain hypothetical, for more academic ears only.