WASHINGTON — Distrust for science experiments and involvement in genetic research is deeply rooted for some cultures living in the United States.
The story of Henrietta Lacks and the Tuskegee Syphilis Experiment are some of the first things that come to mind for some black Americans when the topic of DNA testing is presented.
Lacks was an underprivileged tobacco farmer who had her cells taken without consent in the 1950s. They were the first immortal human cells that could be grown in a test tube.
Lacks’ cells were crucial in many medical breakthroughs, such as the polio vaccine, in vitro fertilization, cloning, gene mapping and more.
Her family lived in poverty after her death, but her cells were being sold and bought throughout the medical community.
Within the same time period, in Alabama, hundreds of African Americans were unethically infected with syphilis during a study by the U.S. government that ended in 1972.
According to the Centers for Disease Control for Prevention, the men were not given the facts needed to offer informed consent and were never given acceptable treatment for the disease.
"We don't store or share any genetic information," said. Gina Paige, co-founder of African Ancestry, said. "That’s a particular concern for our community due to the history and the legacy of how our genetic material has been handled in the past."
With the increasing popularity in DNA genetic testing, WUSA9 looked at privacy policies and security procedures for three companies: African Ancestry, Ancestry DNA and 23andMe.
The purpose is to provide consumers with the information needed to make informed decisions before or after purchasing a genetic DNA test.
How do DNA testing companies store your DNA samples?
For all three of the DNA testing companies, customers are required to submit a saliva sample, but the way your genetic material is used depends on what is outlined in privacy statements.
- Each DNA sample becomes the property of the company as soon as it is delivered.
- The company keeps the DNA samples and analysis confidential to the extent permitted by law.
- After the company delivers its results, it will destroy the sample.
- Once a laboratory partner has given DNA results, the DNA and saliva are stored for future testing.
- Future testing may be done if the customer agrees to research. Read the AncestryDNA Informed Consent here.
- Customers can request that their DNA samples be destroyed by contacting AncestryDNA’s member services department.
- If customers previously agreed to research, Ancestry DNA’s website claims it will not be able to remove genetic information from active or completed research projects. However, the company will not use genetic information after a requested deletion for any new research projects.
- Customer's saliva samples are shipped to a third-party laboratory.
- The company’s biobanking consent document explains customers agree to have 23andme and its contractors access and analyze stored samples of saliva or DNA extracted from saliva. Read the company document here.
- Unless customers agree to the company storing their DNA or saliva, it will be destroyed after the laboratory finishes testing -- Subject to the laboratory's legal and regulatory requirements.
- Customers can update preferences to destroy stored samples in the "Account Settings" section on the website.
How do DNA testing companies share your data?
- Legal Matters: "…we may need to disclose personal information when required by law wherein we have a good-faith belief that such action is necessary to comply with a current judicial proceeding, a court order or legal process served on our Web site."
- Business Transitions: "In the event African Ancestry goes through a business transition, such as a merger, being acquired by another company or selling a portion of its assets, users' personal information will, in most instances, be part of the assets transferred. Users will be notified via email prior to a change of ownership or control of their personal information. If as a result of the business transition, the users’ personally identifiable information will be used in a manner different from that stated at the time of collection they will be given choice consistent with our notification of changes section."
- Check here to read other ways African Ancestry may share your data.
- Service providers: Partner companies will have some of customers' information in their systems. Those companies include laboratory partners, DNA test shipping providers, payment processors, cloud services, etc.
- According to Ancestry DNA’s website, "partners are subject to contractual obligations governing data security and confidentiality consistent with this Privacy Statement and applicable laws."
- Research Partners: When customers consent to genetic research, DNA information is shared with research partners. Check here for a list of Ancestry DNA’s research partners.
- Legal obligations: Ancestry DNA may share personal information if the company believes it is reasonably necessary to comply with valid legal process (e.g., subpoenas, warrants), enforce or apply Terms and Conditions, protect the security or integrity of the Services, or Protect the rights, property, or safety, of the company, its employees or users. Check here to see the number of law enforcement requests the company received.
- If acquired: "If Ancestry or its businesses are acquired or transferred (including in connection with bankruptcy or similar proceedings), we will share your Personal Information with the acquiring or receiving entity. The promises in this Privacy Statement will continue to apply to your Personal Information that is transferred to the new entity."
- Service providers: While 23andMe explained it directly conducts the majority of data processing activities required to provide services, it works with some third-party companies which include order fulfillment and shipping, genotyping lab, cloud storage, marketing, etc.
- Commonly owned entities: "We may share some or all of your Personal Information with other companies under common ownership or control of 23andMe, which may include our subsidiaries, our corporate parent, or any other subsidiaries owned by our corporate parent."
- Legal obligations: Under certain circumstances, 23andMe may share customers' personal information pursuant to laws, regulations, subpoenas, warrants, or orders.
- "23andMe will preserve and disclose any and all information to law enforcement agencies or others if required to do so by law or in the good faith belief that such preservation or disclosure is reasonably necessary." Check here to see the number of law enforcement requests the company received.
- Business transactions: If the company goes through a merger, sale, or acquisition, personal information may be transferred. Customers' information would be held to the promises made in any pre-existing Privacy Statement, according to the company’s website.