Chapter 17 - Third-party sharing of genetic information

Abstract

The advancements in genetic and genomic technology raised new challenges regarding privacy of individuals and confidentiality of their data. Thus the strict control of third-party sharing of genetic information becomes extremely important, as individuals must be protected from unethical use of their data. Disclosure of genetic data to relatives of the individual who was tested raises many pros and cons given that individuals share genetic data and, possibly, genetic risk with their biological relatives. Disclosure of genetic information of the employees to employers may have positive outcomes, such as guaranteeing safe work environment, but also negative consequences, with discrimination being the first, followed by psychological distress and social stigma. Disclosure of genetic data to health insurance companies may generate discrimination in individuals’ access to healthcare services. The provision of genetic data for biomedical research purposes may raise ethical concerns either by sharing of data resulted from genetic testing with research entities or by disclosing the results of genetic research to third parties. In either case, participants’ privacy must be protected, and their autonomy must be respected, so that the trust of population in research is secured. The fate of data collected by the DTC companies is ethically challenging given that many companies do not have a clear and transparent privacy policy. Genetic interpretation services are offered in many instances in an open access manner, raising serious privacy concerns. Databases owned by law enforcement agencies are secured, with access to personal data being granted only in case of a match. Law enforcement agencies may also ask for access to data from other databases, their access being granted only if the relevance of the information is documented and only based on a warrant.