Right to life and Rights to Privacy Genetic Privacy A challenge to Medico-Legal Norms Graeme Laurie (Cambridge university press) Presentation by Shushan Harutyunyan Human rights and Biopolitics, 31 October, 2012 CEU
About the author: Graeme Laurie Graeme Laurie is Professor of Medical Jurisprudence at the University of Edinburgh and Founding Director of the JK Mason Institute for Medicine, Life Sciences and the Law. He previously served as Director of the Arts and Humanities Research Council (AHRC) Research Centre for Studies in Intellectual Property and Technology Law - also known as SCRIPT - from 2007-2011 until he took up the position of Director of Research for the School of Law. His own research interests include the role of law in promoting and regulating science, medicine and technology. He was the Chair of the permanent Ethics and Governance Council of UK Biobank from 2006- 2010 and is currently the Chair of the Privacy Advisory Committee in Scotland. He sits on other bodies such as the Scottish Executives Generation Scotland Advisory Board and the NHS Central Register Governance Board. He has given evidence to the House of Lords Select Committee on the Constitution with respect to forensic uses of bioinformation which is connected to his work as a member of the Nuffield Council on Bioethics.The biography and the photo bythe official website of School of He serves as a member of the BMAs Ethics Commitee and mostLaw, University of Edinburgh recently as a member of the Royal Society Working Group on Sciencehttp://www.law.ed.ac.uk/staff/grae as an Open Enterprise. He is a member of the editorial teams of themelaurie_49.aspx European Journal of Health Law, Medical Law International, Law, Innovation & Technology and the SCRIPT Centres own online journal SCRIPT-ed
Human genome project: Committee’s conclusion While genetics is likely eventually to transform medicine, it may take some while before treatments based on genetic knowledge become available… in the short term, the most widespread use of medical genetics will be, as now, in diagnosis and screening. (1988-1990).
Genetic knowledge: newopportunities – new challenges It is undeniable that they bring considerable benefits to humanity. It is also self-evident, however, that they will change incontrovertibly the way we consider the human species and the manner in which we consider ourselves as part of the species.
Genetic tests – give rise to problems Information concerning an individual’s genetic make-up is of a highly personal and sensitive nature. The exposure of such knowledge can alter self-perception and challenge notions of identity, and could adversely affect an individual in her social, professional and familiar milieux.Photo source: Eurordis.org
General Concerns Ensuring that research subjects are respected and protected from harm, including in particular endangerment of their privacy. Disclosure of information two 3rd parties, which might in turn compromise the interest of the person who has been tested. The state itself can stake a claim to access genetic information in the name of the public interest given the ease with which many forms of this information may be used to identify individuals with high degrees of accuracy. (UK DNA database) Use or possible misuse of available genetic information, moreover, particular features of this information, when other parties stake a claim to the information. (The range of potentially interested parties emerge, but the claims of these parties are not monogamous, thus, potential conflicts also arise).
The important question!!! Deciding whether the promised benefits of genetic advances are truly desirable is to understand what information of this kind can facilitate, and perhaps, what it cannot enable as to do.
The uniqueness of genetic information Question: Where the control of information should be located and how it should be exercised? “Answer”: To whom the information belongs, or to whom it relates – that is, the sources of information – should exercise that control. But… Genetic information relates not only to theSource of the photo – US NationalLibrary of Medicine person, from whom it is derived, but also to the blood relatives of that person…
Concrete and abstract genetic knowledge Family history – flawed by bad or failing memories, a lack of accurate data was to why a family member has become ill or died, and the absence of understanding about the pattern of disease. The genetic constitution of all human beings – 23 pairs of chromosomes (half inherited from mother and half from father). Recessive conditions such as cystic fibrosis or sickle cell anemia are caused when an individual then becomes an asymptomatic career for the condition. From some forms of information about individuals geneticIn the photo - Cystic fibrosis – Source –Wikipedia constitution can be inferred, with varying degrees of certainty. However, the chances of any of these being the case can rarely be accurately predicted simply on basis of test results of a single family member.
Genetic information testing The efficacy of genetic tests is limited. Tests can predict neither the particular likelihood of inset of condition, nor the date when disease will develop, nor the severity of the condition the any one individual is likely to experience. Mutations in disease-causing genes can themselves be responsible for disease. Genetic knowledge is a matter of probabilities rather than certainties.In the photo: A Brief History of Genetic Testing,http://scienceprogress.org/2008/05/a-brief-history-of-genetic-testing/
What is genetic information? Relates to families and not just individuals; Can offer a degree of certainty in determining which of those persons is likely to be affected by genetic disease; Can provide a measure of predictability in the assessment of likelihood of ill health in particular individuals from an affected group; Can reveal secrets about future ill health, even in those who are currently well; Can help to determine future risks in future persons, i.e. ones progeny. Source of the photo - Professional Crime-Writers and Crime- Fighters, official blog
However Other examples of information which functions in one or more of these fashions mentioned in the pervious slide can also be derived from non- genetic data, or at least from data that have not traditionally been considered to be genetic Moreover, genetic information is not a homogeneous class of information, and at best only some limited sub-categories of that class are predictive of future ill health in any significant way. Many other forms of genetic information are no more predictive than is general health information.
Lessons we cannot (currently) learn from genetic information Some individuals will better prepare for decisions about reproduction when armed with proper information about the genetic risks of procreating or the lifestyle changes might minimize the health implications of carrying defective gene. By no means certain that genetic knowledge will achieve satisfactory psychological preparedness – indeed, psychological health may be damaged, rather than improved by such disclosures. Still we cannot know all of the ends to which genetic information might be put. Illegitimate uses of this information, which result in harm, discrimination and stigmatization, must certainly be guarded against. However, the question of where the boundary lies between legitimate and illegitimate use, or legitimate and illegitimate claims with respect
The interested partiesThe individual herselfRelatives of the individualThe insurance industryEmployers and potential employersResearchesThe stateFuture persons (and their representatives)
Further readings available online The book can be found online here Genetic Discrimination and Genetic Privacy in a Comparative Perspective; By Janneke H. Gerards, A. W. Heringa, Heleen L. Janssen Genetic Data and the Law: A Critical Perspective on Privacy Protection; By Mark Taylo Genetic Testing and the Use of Information By Clarisa Long Human Genetic Information: Science, Law and Ethics By CIBA Foundation Symposium
P.S. Interview with Dr. Francis Collins on Genetic Information Nondiscrimination Act of 2008 (The new England journal of medicine ) http://www.youtube.com/watch?v=g5qPZt_maaI (Act of Congress in the United States designed to prohibit the use of genetic information in health insurance and employment) http://www.eeoc.gov/laws/statutes/gina.cfm Opposing repeal of genetic privacy rights CCHC president Twila Brase testifies before House health care committee that will eliminate genetic privacy rights and informed parent consent rights over Minnesota government collection, storage, use and dissemination of DNA from every baby at birth http://www.youtube.com/watch?v=8SVciK-FdJA Preserving Your Genetic Privacy As sequencing individuals genomes becomes cheaper and easier, how can we prevent the release of private genetic information onto the Web? http://www.youtube.com/watch?v=zR0KzKfTa7E