The voices of the study participants illustrate diverse perspectives on topics of identity, race, genetics and health. While opinions about personal racial identity were varied, there was a general consensus that individual identity cannot be captured with the limited constructs of race and ethnicity and should therefore not be interpreted as such. Participants’ healthcare experiences were also different, but the overwhelming majority noted that they had never been directly asked about their ancestral background in a health care setting. This trend is juxtaposed to the fact that several participants thought that race was used by their provider when making clinical decisions. Although some discontinuity existed within opinions about race-based care, most of the participants objected to the development of race-based therapeutics. Many cited social and environmental factors as sources of health disparities and disliked the idea of creating drugs that would treat social groups of people. The majority of participants struggled to articulate their understanding of race, genetics and health. Most of them could draw strong connections between ancestry and genetics, but admitted weaker links existed between race and genetics. Many participants appreciated the potential for genetics to improve healthcare, but hoped that improved technology would allow health providers to assess them individually and not as part of a racial group.
The results of this study are limited to the sample of 22 individuals from two geographic locations. Our participant pool lacked age, gender and education diversity, and the majority of our participants were healthy individuals who often experienced minimal interaction with the health care system. Their voices cannot be extrapolated to experiences of all biracial people. However, to our knowledge, this is the first qualitative study of a multiracial population to investigate their attitudes regarding race, genetics and health. More empirical data is needed on the lay public’s understanding of race and its relationship to human genetic variation. Untangling the web of identity, ancestry and genetics requires that more attention be paid to the diversity that exists not only within the racial spectrum of humankind, but also within the culture, behavior and privileges that define who we are.
Racial and ethnic health disparities are strongly associated with social determinants and individual behaviors (Shavers and Shavers 2006
; Williams and Jackson 2005
). Genetics is one of a multitude factors that may help explain differences in the incidence of certain diseases within racial groups. We must, however, be cautious not to over exaggerate genetics in the study of health disparities (Sankar et al. 2004
). Despite the blurry correlation between race, genetics and ancestral geographic backgrounds, researchers and clinicians use race as a proxy for genetic disease risk (Kittles and Weiss 2003
; Royal and Dunston 2004
). Evaluating the genetic contribution to disease will also demand that more is understood about gene-gene and gene-environment interactions (Manolio and Collins 2007
; Sankar et al. 2004
Genomics research is quickly moving health services towards personalized medicine where patients’ genetic profiles will be used in combination with behavioral and environmental factors when determining the best clinical treatment. However, the technology and financial feasibility for this type of care is not available for most people today. Until each individual has his or her genome sequenced and we understand it, we will remain dependent on group heuristics. Social and natural scientists must conduct interdisciplinary research to bridge the chasm that currently exists in order to move forward our understanding of race and the social and genetic basis of disease. Developing new analytical frameworks will require the expertise of social science researchers who understand the molecular biology of genetics and geneticists that understand the social theories of race and identity.
We cannot discount or exaggerate the correlations between genetics and social racial groups. Self-identified race can correlate with human genetic variation. Race, as a social construct, matters in the lives of people. There are dangers in having a society that doesn’t recognize race and racism. Color-blindness can promote continued racial inequalities and create an illusion that race is no longer an issue (Gallagher 2003
). This can be especially detrimental for individual health outcomes (Williams and Jackson 2000
What can we learn from the voices of these multiracial individuals? Race, identity and genetics are complex constructs that should encourage us to continually and critically evaluate their significance and appropriate applications to healthcare and biomedical research. The recognition of individuals of diverse ancestry challenges our conception of race and its connection to genetic group differences. This is more clearly illustrated in the experiences of people with a multiracial background, but is true for people of all backgrounds.
I think in some ways having a parent who’s white and a parent who’s black, I understand the sort of surface genome type. That because of those two – that union, I have the skin color I have and the nose, I have the lips, and I have this of my mother’s and this of my father’s. I mean, I get that, but I think I also realize that race – because I have parents of different races, that race is probably so much more than just genetics. I mean, that realization is probably more had by me than maybe someone who has parents of the same race. 108
Researchers and health professionals need to move beyond using race as “the best proxy” for genetic variation. Our society is diverse in culture, diet, language, faith and other characteristics outside of race. Improving health will demand that individuals are evaluated within the unique circumstances in which they live. Their health is affected by many factors including their individual genome as well as their education, household wealth, social status, social race and experiences of racism. The perspectives of multiracial individuals charge researchers to address the challenges that we face within our current racial classification system and biomedical research. Their voices demand a paradigm shift in the way we define and use race in the genomic era.