Ethics and Religion Talk: Who Owns My Medical Data?

Is it ethical for medical systems to take ownership of data, genetic information, and tissue coming from medical tests related to patient treatment?

The Reverend Colleen Squires, minister at All Souls Community Church of West Michigan, a Unitarian Universalist Congregation, responds:

"Full disclosure, prior to becoming a minister I worked in a medical research laboratory in Boston, Massachusetts. Part of my role was to triage patients for our medical research studies. The doctors are required to fully explain each study, what patient samples would [be] taken, and how the patient’s sample would be used and analyzed. In my 15 years, I do not recall any patient declining participating in a study. I say all this because medical staff are required to fully explain the studies to the patient and get written consent. Therefore, I do believe is ethical for medical systems to take ownership of the sample, data and history.

Unitarian Universalists strongly believe in science and would support the advancement of science and medicine." 

Father Kevin Niehoff, O.P., a Dominican priest who serves as Judicial Vicar, Diocese of Grand Rapids, responds:

"I find the information in the article cited in this question deeply disturbing! I do judge it unethical because of the method used to obtain consent. The medical community is taking advantage of patients in crisis [to get] consent before treatment. The crisis is the reason for consent, profits, and potential sale of information – demonstrating a lack of concern for the patient and personal privacy.

If the medical facility calls attention to the ownership of the data, genetic information and test results when completing the forms and the individual signs the forms, then this is arguably ethical.

I do note [that], in the article, individuals may cross out objectionable consent statements. I know I will be reading consent statements more closely in the future."

Fred Stella, the Pracharak (Outreach Minister) for the West Michigan Hindu Temple, responds:

"I really don’t have to think too hard for this one. I can’t recall any Hindu scriptures that would advise me on this. But I would passionately argue in favor of individuals having the ability to claim ownership of any data that comes from my tissue. At the bare minimum, we need to be advised on just what we are agreeing to when we fill out medical forms. The problem here is that when you have people in compromised situations, such as needing medical care, they tend to be very pliable. Like when you just want to make a phone call, but have to sign agreements that you know are not in your best interests."

Linda Knieriemen, a retired pastor of the Presbyterian Church (USA), responds:

"Yes, but only when ownership of the information is turned over in a completely transparent manner. A human being “owns” her own medical information until she gives permission to a medical system to use the information. Medical science depends on testing data and tissues to make advancements which ultimately benefit both patients and the pocketbooks of health care providers and health care companies. Honesty and fairness dictates that the human source of the data be honored, recognized and compensated. In our history, it has been a disproportionate number of persons of color, women, and low-income folks whose data and tissues have been unethically taken for financial benefit and scientific progress. This becomes an issue of injustice, racism and sexism. I’m thinking in particular of the stem cells taken from Henrietta Lacks, which continue to be used for medical research and for which she was not compensated or recognized until decades later."

My response:

"Informed consent means that the patient has a basic understanding of the risks and benefits of a given procedure and gives permission to the doctor, hospital, or medical laboratory to do the procedure. If you do not consent to a treatment, the doctor will not treat. This is a fundamental part of ethics and medicine. However, when you get a medical test, the consent form may give ownership of the tissue and data to the medical lab, something which is unrelated to the test or treatment itself. It is not clear what would happen if you did not give consent to that part of the procedure. The medical lab drawing my blood or the hospital sending a biopsy to a lab isn’t necessarily equipped to modify the consent form of the company actually doing the analysis. And the cost of the procedure assumes that the lab will be able to generate additional income from owning the tissue and data. In other words, the patient is selling a part of themselves in order to subsidize the medical test. The ethics here are problematic. Does contesting the consent form put the patient’s life and health at risk by delaying a critical medical test or procedure? Would the patient’s insurance pay a higher price for the test if the patient refuses part of the consent form? Does the patient have the option of using a different lab or paying a higher price in order not to sell their data? Without clear answers to these questions, the consent is not truly informed – a clear violation of medical ethics."