GUEST COLUMN Genetic privacy requires prudence, transparency

Connie Woytowich — PHOTOGRAPHER: Gazette Editorial Board

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By Connie Woytowich
For The Daily Gazette

I teach a college-level course that explores the ethical, legal and scientific issues surrounding the emerging technologies regarding genomic research and development.

I was very pleased to read your editorial regarding the need for increased legislation regarding genetic privacy and will be incorporating it into my course as we just completed studying the topic Genetics, Jobs and Your Rights.

As you can imagine, I have studied several legal cases with my students where the acquisition, use, and sharing of samples that contain DNA with third parties and other agencies did not end well.

The unprecedented ethical and legal issues associated with the science and technology involved with informed consent, third-party doctrine, the employer/employee relationship, and the acquisition, storage, sharing, purchasing and use of samples containing genetic information will surely be revisited many times in our lifetimes.

What must be prevented is a lack of prudence and transparency regarding the most sensitive information of any person: their genome.

Informed consent checkboxes that contain vague and overreaching statements such as, “I authorize my test results and other information to be disclosed to any governmental entity as may be required or permitted by law,” should not be allowed.

The scope of the Genetic Information Nondiscrimination Act (GINA — see the section “Rules Against Acquiring Genetic Information”), combined with the long-standing federal doctrine of third-party doctrine and an emerging technology called familial database testing in New York, make all people vulnerable to genetic surveillance, especially when health information is involved.

When I am asked whether or not I would suggest that someone take a genetic test or supply samples containing DNA, my response is always the same: Do not consent to supply any genetic sample without:

1. Understanding the full scope and limitations of the Genetic Information Nondiscrimination Act;

2. Understanding Familial Database Testing (which became a legal practice in NY in 2017);

3. Understanding the basic elements of informed consent and undue inducement;

4. Understanding Third-Party Doctrine, a long-standing federal doctrine about individuals voluntarily giving information and the “reasonable expectation of privacy” and;

5. Ensuring that the consent form is completely transparent regarding the use, storage, sharing and technologies being utilized on the sample containing your genetic information.

For example: I understand that the sample(s) I am providing would be used solely for diagnostic testing for X. The genetic information in the sample and any copies made will be destroyed immediately upon completion of the testing by X company, and will not be stored. The sample(s) provided and any copies made will not be shared with any third parties or government agencies or purchased by any company. The only information that will be provided to government agencies are name, date of birth, race, ethnicity, gender, address, phone number, and result of the test for X, not the actual sample or any copies.

Protecting sensitive genomic information and demonstrating dignity and compassion for all should be paramount.

People should have the right to ensure their genetic privacy and demand prudence and transparency with regards to any sample that they may provide through informed consent.

This would demonstrate respect for persons and the prioritization of ethical policy regarding personal genetic and health information from our legislators.

Connie Woytowich of Saratoga Springs is a NYS Master Teacher in the South Colonie School District and an adjunct lecturer at the University at Albany.