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Education

***To schedule trainings for your staff, contact us at genomics@utah.gov***

Ethical, Legal, and Social Implications

As genomics is used for the advancement of public health, it is vital that professionals address the many ethical, legal, and social implications or ELSI, that arise from genetic information, including family history. Some of these issues may include:

  • Discrimination in employment and health insurance coverage

  • Stigmatization based on genetic information

  • Potential screenings for chronic diseases or for diseases in which there is no current treatment available

  • Informed consent

  • Privacy rights

  • Confidentiality of genetic information

  • Widening health disparities based on access to genetic technology

  • Commercialization of genetic tests targeted to the public

Public health professionals can play a vital role in addressing these issues. Public health leadership should encourage discussion on these issues in their communities. We must encourage our policymakers to address these issues, with input from a diverse variety of communities and populations. Professionals have a responsibility to become informed on genomic issues and apply them to their practice. Education of the current and public health workforce is a critical step for ensuring the public is adequately informed about genomic implications.

 

Genetic Discrimination Laws

UTAH - In 2002, the Utah Genetic Testing Privacy Act was passed. This law "prohibits employers from using private genetic information for hiring and promotion purposes". The law also "places restrictions on health insurers' use of genetic information with limited exceptions". Private genetic information in this law refers to any information about an individual that has been derived from an inherited gene(s) or from specific DNA markers, and which has been obtained from a genetic test or analysis of the individual's DNA.

FEDERAL - No federal legislation has been passed to protect against genetic discrimination. However, the Genetic Information Nondiscrimination Act has been introduced numerous times to the Senate and House of Representatives. On October 14, 2003 the act was unanimously passed by the Senate 95-0 but has yet to be voted into law by the House. The Genetic Information Nondiscrimination Act would protect individuals from discrimination in employment and health insurance coverage based on genetic information.

Both the Utah Genetic Testing Privacy Act and the proposed Genetic Information Nondiscrimination Act DO NOT protect against discrimination based on information from a medical family history.

Resources

 

"Genetic discrimination is the civil-rights issue of
the 21st century."

Martha Volner,
Alliance of Genetic Support Groups