21 January 2019

Genomic Identity and the ancestry industry

Readers of works such as Kim TallBear's 2013 'Native American DNA: Tribal belonging and the false promise of genetic science' and 'Genomic articulations of indigeneity' in (2013) 43(4) Social Studies of Science 509-533 or Jonathan Kahn's Race in a Bottle: The Story of BiDil and Racialized Medicine in a Post-Genomic Age (Columbia University Press, 2014) will be unsurprised by 'Constructing identities: the implications of DTC ancestry testing for tribal communities' by Hina Walajahi, David R. Wilson and Sara Chandros Hull in (2019) Genetics in Medicine.

The authors comment
 Direct-to-consumer (DTC) genetic ancestry companies have rapidly increased in popularity, with top testing services maintaining genetic databases of several million consumers. While genetic ancestry tests are often characterized as recreational, companies invoke deeply personal concepts of individual identity, group membership, and kinship when marketing their services. In particular, many companies claim to be able to determine Native American heritage, claims that are not supported by the state of the science and may have significant cultural and political consequences for US tribal communities. This study aims to fill the gaps in empirical work on this issue and characterize how genetic ancestry companies articulate indigenous identity through their marketing strategies. 
We conducted a qualitative content analysis of the public facing websites for 25 DTC genetic ancestry companies that offer services measuring Native American ancestry. xxx Our findings describe how genetic ancestry companies promote a causal relationship between genetics and self-identity through marketing language such as “Discover Yourself” and “Are you Native American?” and how this may affect US tribal communities. 
Genetic ancestry company claims regarding genetic ancestry, personal identity, and cultural membership are problematic and challenge how US tribal nations currently identify and create potential obstacles for tribal sovereignty.
The use and misuse of DTC genomics for 'ancestral belonging' was highlighted last decade in 'The Science and Business of Genetic Ancestry Testing' by  Deborah A. Bolnick, Duana Fullwiley, Troy Duster, Richard S. Cooper, Joan H. Fujimura, Jonathan Kahn, Jay S. Kaufman, Jonathan Marks, Ann Morning, Alondra Nelson, Pilar Ossorio, Jenny Reardon, Susan M. Reverby and Kimberly TallBear in (2007) 318(5849) Science  399-400.

It commented
At least two dozen companies now market “genetic ancestry tests” to help consumers reconstruct their family histories and determine the geographic origins of their ancestors. More than 460,000 people have purchased these tests over the past 6 years, and public interest is still skyrocketing. Some scientists support this enterprise because it makes genetics accessible and relevant; others view it with indifference, seeing the tests as merely “recreational.” However, both scientists and consumers should approach genetic ancestry testing with caution because (i) the tests can have a profound impact on individuals and communities, (ii) the assumptions and limitations of these tests make them less informative than many realize, and (iii) commercialization has led to misleading practices that reinforce misconceptions. 
The Impact of “Recreational Genetics” 
Although genetic ancestry testing is often described as “recreational genetics,” many consumers do not take these tests lightly. Each test costs $100 to $900, and consumers often have deep personal reasons for purchasing these products. Many individuals hope to identify biological relatives, to validate genealogical records, and to fill in gaps in family histories. Others are searching for a connection to specific groups or places in Eurasia and Africa. This search for a “homeland” is particularly poignant for many African-Americans, who hope to recapture a history stolen by slavery. Others seek a more nuanced picture of their genetic backgrounds than the black-and-white dichotomy that dominates U.S. racial thinking. 
Genetic ancestry testing also has serious consequences. Test-takers may reshape their personal identities, and they may suffer emotional distress if test results are unexpected or undesired. Test-takers may also change how they report their race or ethnicity on governmental forms, college or job applications, and medical questionnaires . This could make it more difficult to track the social experiences and effects of race and racism. Genetic ancestry testing also affects broader communities: Tests have led African-Americans to visit and financially support specific African communities. Other Americans have taken the tests in hope of obtaining Native American tribal affiliation (and benefits like financial support, housing, education, health care, and affirmation of identity) or to challenge tribal membership decisions. 
The authors comment
It is unlikely that companies (and the associated scientists) deliberately choose to mislead consumers or misrepresent science. However, market pressures can lead to conflicts of interest, and data may be interpreted differently when financial incentives exist. For scientists, these incentives include paid consultancies, patent rights, licensing agreements, stock options, direct stock grants, corporate board memberships, scientific advisory board memberships, media attention, lecture fees, and/or research support. Because scientific pronouncements carry immense weight in our society, claims must be carefully evaluated when scientists have a financial stake in them. Unfortunately, peer-review is difficult here, because most companies maintain proprietary databases. 
As consumers realize that they have been sold a family history that may not be accurate, public attitudes toward genetic research could change. Support for molecular and anthropological genetics might decrease, and historically disadvantaged communities might increase their distrust of the scientific establishment. These tests may also come up in medical settings: Many consumers are aware of the well-publicized association between ancestry and disease, and patients may ask doctors to take their ancestry tests into consideration when making medical decisions. Doctors should be cautious when considering such results. 
We must weigh the risks and benefits of genetic ancestry testing, and as we do so, the scientific community must break its silence and make clear the limitations and potential dangers. Just as the American Society of Human Genetics recently published a series of recommendations regarding direct-to-consumer genetic tests that make health-related claims, we encourage ASHG and other professional genetic and anthropological associations to develop policy statements regarding genetic ancestry testing.
'In the blood: the myth and reality of genetic markers of identity' by Mark A. Jobling, Rita Rasteiro and Jon H. Wetton in (2016) 39(2) Ethnic and Racial Studies 142-161 comments
The differences between copies of the human genome are very small, but tend to cluster in different populations. So, despite the fact that low inter-population differentiation does not support a biological definition of races statistical methods are nonetheless claimed to be able to predict successfully the population of origin of a DNA sample. Such methods are employed in commercial genetic ancestry tests, and particular genetic signatures, often in the male-specific Y-chromosome or maternally-inherited mitochondrial DNA, have become widely identified with particular ancestral or existing groups, such as Vikings, Jews, or Zulus. Here, we provide a primer on genetics, and describe how genetic markers have become associated with particular groups. We describe the conflict between population genetics and individual-based genetics and the pitfalls of over-simplistic genetic interpretations, arguing that although the tests themselves are reliable, the interpretations are unreliable and strongly influenced by cultural and other social forces.