Genetic Privacy

Updated On Feb 25, 2022

This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.

Introduction

Genetic privacy is the protection of genetic information from unauthorized disclosure to third parties, such as family members, employers, insurers, law enforcement, and the government. Genetic information can include DNA test results, biochemical tests, and diagnoses made from physical examination or family histories.

On a federal level, there are two main statues that protect genetic privacy: the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). While these two acts will be summarized below, more information can be found on HIPPA on the U.S. Department of Health and Human Services (HHS) website; and about GINA on the National Human Genome Research Institute (NHGRI) website.

HIPAA regulates disclosures of medical information in healthcare settings. HIPAA regulates how and when health providers can disclose your medical information. For example, if you have genetic testing and your daughter calls to get the results, HIPAA prevents this disclosure without your authorization. Likewise, if you are applying for life insurance and a life insurance company calls your doctor to get your medical records, HIPAA prevents this disclosure without your authorization. However, HIPAA does allow for some disclosures without the patient’s authorization. For example, it allows the disclosure of information for the purpose of treatment, payment, or healthcare operations. Thus, if you are in a car accident and the emergency room calls your provider to find out what medications you are taking, this disclosure is allowed as it is for the purpose of treatment. Likewise, when your provider bills your insurance company, the insurance company can request records to determine payment.

GINA is intended to prevent discrimination based on genetic information by health insurers and employers. Before GINA, it was legal for a health insurance company to charge a person more for health insurance, or to deny them health insurance, based on their genetic information. For example, a person who was perfectly healthy, but had a higher chance of developing cancer could be denied health insurance. After GINA was implemented, individuals were protected from discrimination based on genetic information by health insurers and employers.

HIPAA and GINA do not apply in all situations. For example, neither apply to life, disability, or long-term care insurance companies. It is legal for a life insurance company to ask if an applicant has had genetic testing, then make coverage decisions based on that answer, or even require testing prior to coverage. GINA does not apply to companies with few employees, US military members who get care through Tricare, veterans who get care at the VA or through the Indian Health Service, or federal employees enrolled in the Federal Employee Health Benefits Plan.

As scientists started researching human genetics, it became apparent that people also needed genetic privacy protections in medical research. Thus, regulations have been written to protect research subject’s genetic information. For more information on genetic privacy in research, please visit the NHGRI’s website.

Legislation and Regulation

The HIPAA Privacy Rule established national standards to protect individuals’ medical records and other personal health information and applies to health plans, health care clearinghouses, and those health care providers that conduct certain health care transactions electronically. More information on HIPPA can be found on the HHS website.

Although more focused on genetic discrimination than genetic privacy, the federal government attempted to address concerns through the passage of the Genetic Information Nondiscrimination Act of 2008 (GINA). More information on this act can be found on the National Human Genome Research Institute (NHGRI) website which provides an overview of GINA and describes what protections GINA does and does not offer. Additional protections can be found in other legislation, such as the Affordable Care Act and the Americans with Disabilities Act. A summary of those protections can be found elsewhere on the NHGRI website.

Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.

 

Policy Positions

Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on genetic privacy. Explore these position statements below.

 

Position Statements by Organizations
Considering Genetic Testing and Insurance
Organization
American Society of Human Genetics (ASHG)
Subject
Access to Genetic Services Insurance Genetic Privacy
Date
January 1, 1995
Considering Family Privacy in Genetic Research and Medicine
Organization
American Society of Human Genetics (ASHG)
Subject
Family Health History Genetic Privacy
Date
March 1, 2000
Advising on GWAS Data Sharing
Organization
American Society of Human Genetics (ASHG)
Subject
Genetic Research Genetic Privacy
Date
November 5, 2000
Advising on the Implementation of GINA
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Genetic Testing Genetic Privacy
Date
December 18, 2008
Privacy and Confidentiality of Genetic Information: the Role of the Nurse
Organization
International Society of Nurses in Genetics (ISONG)
Subject
Genetic Privacy
Date
April 5, 2010
Nondiscrimination
Organization
National Society of Genetic Counselors (NSGC)
Subject
Discrimination Genetic Privacy
Date
June 1, 2011
Joint Letter to Congress in Support of Genetic Information Non-discrimination Act (GINA)
Organization
American Academy of Family Physicians (AAFP)
Subject
Genetic Privacy Legal Discrimination
Date
April 21, 2015
Sign-on letter to the Response to the NIH Draft Genomic Data Sharing (GDS) Policy
Organization
Genetic Alliance
Subject
Genetic Privacy Genetic Research
Date
November 20, 2013
Response to the NIH draft Genomic Data Sharing (GDS) policy
Organization
Genetic Alliance
Subject
Genetic Privacy Genetic Research
Date
November 20, 2013
Clinical Data Sharing
Organization
National Society of Genetic Counselors (NSGC)
Subject
Genetic Research Genetic Privacy
Date
April 15, 2015
Supporting Research Participant Privacy
Organization
American Society of Human Genetics (ASHG)
Subject
Genetic Privacy Genetic Research Legal
Date
June 30, 2015
Comments on Proposed Rule, Amendments to regulations under the Genetic Information Nondiscrimination Act of 2008, RIN 3046-AB02
Organization
Genetic Alliance
Subject
Genetic Privacy Workplace Legal
Date
January 28, 2016
Protecting Genetic Privacy in Law Enforcement
Organization
American Society of Human Genetics (ASHG)
Subject
Genetic Privacy Legal
Date
March 2, 2017
Workplace Wellness Programs
Organization
National Society of Genetic Counselors (NSGC)
Subject
Discrimination Genetic Privacy
Date
September 13, 2017
Blood Spot Storage and Use
Organization
National Society of Genetic Counselors (NSGC)
Subject
Newborn Screening Genetic Privacy
Date
December 12, 2017
Protecting Genetic Privacy of Immigrant Families
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Legal Genetic Privacy
Date
August 8, 2018
Prohibiting Genetic Discrimination
Organization
American Society of Human Genetics (ASHG)
Subject
Discrimination Genetic Privacy
Date
January 2, 2019
At-Home Genetic Testing Position Statement
Organization
National Society of Genetic Counselors (NSGC)
Subject
Direct-to-Consumer Testing Genetic Privacy
Date
June 24, 2019
Advancing Research and Privacy Protections
Organization
American Society of Human Genetics (ASHG)
Subject
Genetic Privacy Genetic Research
Date
September 5, 2019
Stewardship of patient genomic data: A policy statement of the American College of Medical Genetics and Genomics (ACMG)
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Genetic Privacy
Date
October 29, 2021

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