Can genomics tell me who I am? Essentialistic rhetoric in direct-to-consumer DNA testing

Recently, a high number of companies have emerged that offer online direct-to-consumer DNA testing. We investigate these consumer genomics companies through the lens of identity. We find that many of them appeal to a kind of “genetic essentialism”. We suggest that this appeal is key to understanding why consumers are attracted to their services. There seem to be three very different currents within contemporary culture at work: the pre-modern search for a naturalistic understanding of identity, the modern enthusiasm for science, and the post-modern emphasis on radical individual self-determination. The support for our hypothesis comes from the companies' websites and the online testimonials of satisfied customers. We discuss the risk of distortion of the subjective experience of identity due to unreliable or uninformative test results, inadequate or misleading explanation, and the fact that the science is still too weak to yield meaningful results.

[1]  H. Birx,et al.  The Mismeasure of Man , 1981 .

[2]  A. Baier,et al.  Reasons and Persons , 1984 .

[3]  W. Feinberg,et al.  On After Virtue , 1984 .

[4]  Charles Taylor Sources of the Self: The Making of the Modern Identity , 1990 .

[5]  C. Calhoun Social theory and the politics of identity , 1994 .

[6]  D. Nelkin,et al.  The DNA Mystique: The Gene As a Cultural Icon , 1995 .

[7]  Genetic predisposition testing for breast cancer. , 1996 .

[8]  Genetic predisposition testing for breast cancer. , 1996, The cancer journal from Scientific American.

[9]  Patricia Goodson,et al.  The DNA Mystique: The Gene as a Cultural Icon , 1997 .

[10]  S. Turkle Life on the Screen: Identity in the Age of the Internet , 1997 .

[11]  M. Burgess,et al.  Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era , 1998 .

[12]  J. Fishman,et al.  Collective Fear, Individualized Risk: the social and cultural context of genetic testing forbreast cancer , 2000, Nursing Ethics.

[13]  Nikolas Rose,et al.  Genetic risk and the birth of the somatic individual , 2000, The Body.

[14]  W. Kymlicka,et al.  Citizenship in diverse societies , 2000 .

[15]  International Human Genome Sequencing Consortium Initial sequencing and analysis of the human genome , 2001, Nature.

[16]  Jack W. Snyder,et al.  ENCYCLOPEDIA OF ETHICAL, LEGAL, AND POLICY ISSUES IN BIOTECHNOLOGY , 2001 .

[17]  Timothy B. Stockwell,et al.  The Sequence of the Human Genome , 2001, Science.

[18]  J. Gern The Sequence of the Human Genome , 2001, Science.

[19]  J. Pasacreta Collective fear, individualized risk: the social and cultural context of genetic testing for breast cancer. , 2001, Nursing ethics.

[20]  J. V. Moran,et al.  Initial sequencing and analysis of the human genome. , 2001, Nature.

[21]  Aleida Assmann,et al.  Identities : time, difference, and boundaries , 2002 .

[22]  Genetic Determinism, Genetic Reductionism, and Genetic Essentialism , 2002 .

[23]  P. Kollock,et al.  Communities in Cyberspace , 2002 .

[24]  Richard Coyne,et al.  Building Virtual Communities: Mask and Identity: The Hermeneutics of Self-Construction in the Information Age , 2002 .

[25]  Direct-to-consumer sales of genetic services on the Internet , 2003 .

[26]  B. Wilfond,et al.  Direct-to-consumer sales of genetic services on the Internet , 2003, Genetics in Medicine.

[27]  R. Tutton “They want to know where they came from”: population genetics, identity, and family genealogy , 2004, New genetics and society.

[28]  T. Lemke Disposition and Determinism – Genetic Diagnostics in Risk Society , 2004 .

[29]  Mark D. Shriver,et al.  Genetic ancestry and the search for personalized genetic histories , 2004, Nature Reviews Genetics.

[30]  C. Hauskeller Genes, genomes and identity. Projections on matter , 2004, New genetics and society.

[31]  H. Ostrer The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease , 2006 .

[32]  GAO-06-977T Nutrigenetic Testing: Tests Purchased from Four Web Sites Mislead Consumers , 2006 .

[33]  Shaun P. Young Identity in Democracy , 2006 .

[34]  Individuals, Families, and the New Era of Genetics: Biopsychosocial Perspectives , 2007 .

[35]  A. Nordgren Genetics and Identity , 2008, Public Health Genomics.

[36]  M. McGowan,et al.  Using Lessons Learned From BRCA Testing and Marketing: What Lies Ahead for Whole Genome Scanning Services , 2008, The American journal of bioethics : AJOB.

[37]  E. Matloff,et al.  Direct to Confusion: Lessons Learned from Marketing BRCA Testing , 2008, The American journal of bioethics : AJOB.

[38]  M. W. Foster,et al.  The contractual genome: how direct-to-consumer genomic services may help patients take ownership of their DNA. , 2008, Personalized medicine.