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The significance of genes in the establishment of an individuals identity

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Abstract Purpose To explore many questions raised by genetics concerning personal identities that have not been fully investigated. Methods We interviewed in depth, for 2 hours each, 64 individuals who had or were at risk for Huntington disease, breast cancer, or alpha-1 antitrypsin deficiency. Results These individuals struggled with several difficult issues of identity.

They drew on a range of genotypes and phenotypes e. They often felt that their predicament did not fit preexisting categories well e. Hence, individuals varied in how much genetics affected their identity, in what ways, and how negatively. Factors emerged related to disease, family history, and other sources of identity.

These identities may, in turn, shape disclosure, coping, and other health decisions.

Conclusions Individuals struggle to construct a genetic identity. They view genetic information in highly subjective ways, varying widely in what aspects of genetic information they focus on and how. These data have important implications for education of providers to assist patients with these issuespatients, and family members; and for research, to understand these issues more fully.

Genetics are deeply constitutive of the self, but the field is still relatively new, with many new markers discovered and marketed each year, and physician and patient understandings of genetics often remain limited. Sex, social class, and particular aspects of a disease can affect how patients integrate into their lives chronic diseases such as multiple sclerosis and cancer, 4 renegotiating identity, and constructing their biographies.

Radical surgery, for example, can affect both private selves and public social identities. For example, research has found that individuals who are carriers, noncarriers, and at risk for a disease may all experience threatened self-concept e. For instance, a range of psychologists have probed identity development. Erikson 13 focused on the stages in the development of identity through the life cycle—from childhood to adolescence to adulthood.

He argued that individuals make commitments in three main domains—fidelity, ideology, and work—that shape their identity development. Psychologists have examined other aspects of identity development as well—e.

“Am I my genes?”: Questions of identity among individuals confronting genetic disease

Sociologists, too, have explored identity—at the level of broad social groups, categories, and roles e. She described several conceptions of identity—qualitative, numerical i.

  • As he explains, "over the past decade, biomythology has permeated American culture as never before;
  • Results were given to all of the individuals in written documents containing technical information, a probability of kinship and a lay explanation of the test and its result;
  • University of Wisconsin Press;
  • Just as a person must have the right to promote the interests of their family, so must they have the right to promote the interests of their ethnoracial group;
  • The idea that gender norms, sexual orientations, and social institutions are genetically or neuro-hormonally 'hard-wired' flourished in the long shadow of the Human Genome Project" 2004, p.

Many questions persist concerning its nature and scope— e. Shiloh 25 suggested self-regulatory theory as a framework for conceptualizing genetic counseling, whereby clients actively process information; and identity i.

But here, too, questions emerge of how individuals incorporate this personal sense of vulnerability into their identity and sense of themselves—e.

Of note, attention has also been given to issues of how genetic markers may affect social—specifically, racial and ethnic—identities. Hence, this article focuses on markers related to disease, not ancestry per se. In short, given these varied perspectives on identity in the previous literature, critical questions remain of how individuals who are at risk for, or have, genetic diseases themselves view and experience these issues, and incorporate genetic risk information into their identities and senses of themselves—e.

We selected a heterogenous group to understand most fully the ranges of issues and perspectives that could arise regarding genetic issues.