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29 July 2002 The power of privacyOn the surface, it would seem that guaranteeing privacy protection for human genetic samples and information, and preventing discriminatory use of such information would be goals shared by most Australians. However, recent advances in human genetics have created opportunities and dilemmas, as well as confusions about the nature of genetic information and its potential power. Formal public dialogue on these matters began with an issues paper by the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) published in February 2001, following a joint inquiry into genetic testing and information at the request of the federal government. As part of a commitment to ensure widespread public consultation, the deadline for the joint inquiry has been extended until March 2003, and the paper remains open for comment. Although the ALRC/AHEC paper on emerging issues about the control and ownership of human genetic samples and information does explore important issues, it also makes some crucial assumptions in its interpretation of its mandate. The extended commentary period provides an opportunity for the public to more closely examine the recommendations in the paper, and to become educated about the prospects and problems presented by genomic technology. I focus here on a few selected ethical issues, notably leaving aside those associated with intellectual property and ownership. ExpectationsWhat can we expect from the data generated through the human genome projects? Optimistic forecasters propose that detailed knowledge of the human genetic sequence will enable researchers to identify genes associated with various disease conditions, from traditional genetic diseases such as cystic fibrosis and Huntington’s disease to more complex, clearly multifactorial diseases such as asthma, schizophrenia, and diabetes. However, such research requires genetic samples and clinical information both from the ill and those who are currently healthy but who may develop genetically associated conditions. In order to disentangle the genetic component contributing to a disease from other factors that might trigger it (for example, other parts of the genetic sequence, foetal/developmental conditions, environmental surroundings, and other crucial influences), research must establish a baseline of ‘normal’ to which the disease condition can be compared. This requires not only a genetic sample, but also extensive medical histories of both the affected persons and, typically, family histories.
Yet medical advances that will be noticeable to the average person will take a considerable investment of resources and are now largely just promissory notes. Currently our genetic knowledge allows screening or testing for particular disease-associated genes, but few cures or treatments exist aside from selective termination of affected foetuses. Further, it is unlikely that there are many medical conditions where there is a simple relationship between genetic sequence and the associated disease condition, and very unlikely that there are any of which we are not already aware; genes act in a complex relationship with other biological and environmental processes. The ALRC/AHEC paper recognises the need to educate the public about what they can realistically expect from genomic advances (as well as the need not to conflate these debates with those about genetically-modified organisms, ‘mad cow’ disease, cloning, and so on), and about the limits of genetic determinism. However, parts of the document seem to emphasise that genes are causes, for example in the discussion of penetrance (the degree of likelihood that someone who has a particular genetic sequence that could cause a disorder will actually develop that disorder). Such discussions tacitly assume that genetic causes exist; we simply have yet to discover or understand them. This assumption leads us to focus primarily on treating or fixing our genes rather than the surrounding environment or other causal factors. Of course, the ALRC/AHEC report is far from unique in making such assumptions, and its mandate could be argued to have caused it to be framed in these terms. However, to provide for even-handed public consideration of the potential problems created by the availability of genetic information, it is also desirable to be more realistic about the prospects of benefit from this information. Finding ‘the gene’ or the set of genes associated with a particular disease condition, say asthma, may allow development of targeted drugs and so on, but is not a cure in itself nor does it allow direct treatment. The report does not adequately address these issues and limitations. Although the problem of uncertainty is typical in policy-making in a rapidly evolving area of public concern, gene technology is accompanied by special concerns, perhaps if only because the public thinks it is. ConflictsThe need to create an extensive database of genetic and medical information together with Australia’s push to develop genetic technologies creates a conflict between individuals’ concerns about privacy and the desire of society as a whole for medical and public health advances. The ALRC/AHEC paper rightly stresses that researchers will need extensive information—likely with identifiers to individuals retained—in order to achieve these advances, whereas any potential volunteers for research will have fears about future discrimination on the basis of their genes. In contrast, the Australian Academy of Science (AAS) has claimed that the fears of potential volunteers have been overemphasised and are based on misunderstandings of the sort of information required, suggesting that an ‘opt-out’ system should be established for ‘individuals who do not feel at ease with an altruistic approach to availability of health information’. An opt-out system would force individuals to take the initiative to remove their information from the system and thus would place the burden in the wrong place, at least given current uncertainties about the extent to which genetic information might be accessible or used for discriminatory purposes.
To assume that we all tacitly agree to participate by allowing our medical and genetic information to be freely used (and that not to do so would be ‘unaltruistic’) dismisses the very real concerns of individuals and of families about privacy, genetic and otherwise. To equate genetic information with infectious diseases (as the AAS does by stressing that genetic information should be shared in order to further public health, as with reportable conditions such as HIV or tuberculosis) is dangerous and can cause unneeded confusions in the public about of the certainty of our knowledge about gene action and the nature of genetic-associated diseases. Research in public health does depend on compulsory notification for certain health conditions. However, genetic information cannot as easily be de-identified as other forms of medical and person information, because it relies on having fairly extensive genetic sequences from the individual in question. Thus, uncertainty about how genetic information might be used presents a higher threshold for privacy protection guarantees on the part of researchers who desire to use such information, for example, more extensive processes to protect confidentiality with ongoing oversight by ethics committees well educated in genetics. Such a threshold must be ensured not only through legal protections but also through thoughtful and responsive public health policy that is able to rapidly evolve in order to respond to advances in genetic technologies. If policy is careful and thorough, it will reduce the need for the courts to arbitrate cases after violations of privacy have occurred, as well as reassure the public about their genuine concerns about genetic information. There is no doubt that genetic information will be powerful, although perhaps not in ways very different from other sorts of personal or medical information. Popular media portrayals of the ‘new genetics’ propagate the idea that genetic sequence holds the key to the mysteries of life, as it were. But actual research into the relationship between genetic sequence and phenotype, or particular disease conditions, has revealed considerably more complex interactions between contributing factors. These are perhaps not different in kind from those involved in many other disease conditions thought not to be primarily genetically caused. Information about behaviours, such as eating habits, use and abuse of alcohol or drugs, sexual practices and preferences, and so on are equally private and yet may also be crucial factors in determining cause, prevalence, and prevention strategies for particular diseases. We have grown accustomed to revealing such information, either to further our own medical care or sometimes to assist in what we view as important research. But at this time, the public’s anxieties about genetic information are very real, not in the least part due to the complexities of the science at issue, its unfamiliarity, and the myths surrounding its power, and thus must be taken seriously when reflecting on developing law and policy in this and related areas. The ALRC/AHEC paper should be applauded for its openness to public concerns, but the joint inquiry should use the remaining consultation period not only to obtain public opinion, but to educate the public on the prospects and limits of genetic information and more generally on their current privacy rights. The public in turn should participate in the community consultation to discover what the real issues are, not only about genetic privacy but also about trade-offs between medical confidentiality and potential health advance. REFERENCESAustralian Law Reform Commission and Australian Health Ethics Committee. 2001, ‘Issues Paper on Protection of Human Genetic Information’, October. [Online], Available: http://www.austlii.edu.au/au/other/alrc/publications/issues/26/ Australian Academy of Science, Comments. 2002, 31 January. [Online], Available: http://www.science.org.au/academy/media/ahec.htm Rachel A. Ankeny is the Director of the Unit for History and Philosophy of Science at the University of Sydney, and her research is on issues in bioethics and in history and philosophy of biomedical sciences, particularly genetics. |
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