Considering the Moral Work of Genetic Counselors: A Feminist Approach, Recognizing the Moral Significance of Housekeeping Issues

Abstract

Genetic information is important in the identification, treatment, or counseling of patients at risk for inherited disorders. Genetic information is essential to conduct risk assessments which can uncover hereditary explanations for family history of diseases or conditions and influence the use of genetic-testing tools, preventative clinical care, and risk management options. This information is treated as confidential much like general health information. However, genetic information can provide knowledge such as health status or predictive risk of genetic disease that is not only relevant to the patient undergoing testing but also to a genetic relative. This information is not always used in the care of genetic relatives who might benefit from it because a patient’s decision to share or not disclose information to a relative is autonomous. With such great emphasis on respect for patient choices and values, a tension emerges between patient autonomy and right to privacy and beneficence and nonmaleficence, especially when a patient refuses to inform relatives of their risk for genetic disease or a provider learns that their patient did not inform a relative. Mainstream bioethical literature usually presents the patient and the relative as two separate parties, but the heritability of genetic information complicates this view. The failure to disclose genetic information may lead to harm to those who would be affected by the information especially when the genetic information may result in clinical action like treatment or prevention that would prevent or mitigate the harm. For this reason, disclosing genetic information to others beside the patient is a moral concern in clinical genetics. In this thesis, I will argue that feminist ethics which recognizes the moral significance of housekeeping issues offers several advantages over principle-based ethics as a resource to attend to moral problems which arise in clinical genetics practice. These advantages include recognizing the importance of relationships, understanding that morality is what happens between people, and supporting practices of responsibility. Using a feminist ethics lens to evaluate moral problems, serves as an ethical resource for the practice of clinical genetics as genetics professionals encounter advancements in technology and face new types of genetic information. With an overall frame that recognizes the moral significance of housekeeping issues, this lens serves as a resource for genetic counselors navigating the moral tension experienced when considering disclosure of genetic information to a genetic relative.