Confidentiality & the Risk of Genetic Discrimination

Abstract

In the past decade, federal and state laws have been passed to provide legal protections against genetic discrimination as it pertains to employment, health coverage and rates. Much of the public and a notable portion of medical providers are not aware of the legislation surrounding genetic discrimination and unnecessary concerns about genetic privacy can get in the way of opportunities to deliver the optimal medical care. Patient health information including genetic testing and family history are protected under Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). Additional protections are afforded through the American with Disabilities Act, state laws, and the Affordable Care Act. Communicating a genetic test result back to a patient is important for medical management decisions. Physicians also have a duty to warn patients of genetic findings and that the patient’s relatives are at risk from a genetically transferable condition. Medical care providers cannot, however, inform relatives in the absence of patient permission. Because management of a patient with a positive genetic test extends to the family members, it is important to empower and provide the tools for the patient to communicate with relatives. A discussion of family implications includes benefits and challenges to the larger family, maintaining confidentiality in light of sharing information with family members, and disclosure of result if patient dies. Emerging issues include the use of whole genome sequencing for both germline and tumor DNA and confidentiality in the era of social media.

Whole genome sequencing in (recurrent) glioblastoma: challenges related to informed consent procedures and data sharing

“…In the EU discrimination based on genetics is forbidden by law and genetic data is classified as sensitive data under the General Data Protection Regulation (GDPR) [ 35 ]. In stark contrast, in the United Kingdom, findings can be used to determine insurance thresholds if policy exceeds a certain financial limit, while in the United States (US) patients may need to disclose genetic findings for certain kinds of insurance [ 2 , 18 ]. The Genetic Information Nondiscrimination Act (GINA) in the US, which excludes employers with under 15 employees, does not protect against genetic discrimination by disability-, long term care- and life insurance [ 11 ].…”

“…The Genetic Information Nondiscrimination Act (GINA) in the US, which excludes employers with under 15 employees, does not protect against genetic discrimination by disability-, long term care- and life insurance [ 11 ]. Accordingly, patients undergoing germline testing have reported fear for discrimination based on genetics, for example by insurance companies or employers [ 18 ]. Regulations protecting personal data and conditions allowing for secondary use differ regionally in both the US [ 20 ] and the EU [ 24 ].…”

“…Organizations and studies have made recommendations for returning genomic findings in oncology. An example of current practice would be the combination of specific informed consent and tiered consent [28], corresponding may need to disclose genetic findings for certain kinds of insurance [2,18]. The Genetic Information Nondiscrimination Act (GINA) in the US, which excludes employers with under 15 employees, does not protect against genetic discrimination by disability-, long term care-and life insurance [11].…”

Genetic Information in the Light of Genetic Discrimination: the Experience of Foreign States

“…Genetic discrimination concerns three main areas: employment, insurance, services. The issues of discrimination on the basis of the genetic status of the most vulnerable groups of the population, which include ethnic communities and indigenous peoples, form a separate category (Gammon & Neklason, 2015). Special attention should be paid to the following aspects of discriminatory practices:…”

Genetic discrimination in foreign legislation and law-enforcement practice

“…The general prohibition of discrimination based on genetic heritage is contained in article 11 of the Council of Europe Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: 1997 Convention on Human Rights and Biomedicine (Oviedo Convention). However, none of the designated acts discloses the concept of genetic discrimination [3].…”