Should Researchers Be Obliged to Return Genetic Data to Research Participants?


genetic testing

The Genomics Law Report asked that question in a recent roundtable of researchers, bioethicists, and lawyers. In his commentary, Daniel MacArthur, a scientist with the Wellcome Trust Sanger Institute, asserts:

… withholding medically useful (or even simply intellectually interesting) information from research subjects even if they request it – is ethically problematic. In the absence of convincing evidence that disclosure of results causes harm, I would argue that the default position should be that research participants have complete access to their own genetic data if they request it.

Absolutely right. Early on bioethicists (in the grip of an unwarranted genetic determinism themselves or fearing that the public might be) argued that such dangerous information should be kept away from people who might misunderstand it or misuse it.  It turns out that ordinary people can handle even dire genetic information without freaking out.

I addressed the issue of genetic testing paternalism back in 1999 in my article, "Warning: Bioethics May Be Hazardous to Your Health."

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  1. Who gives a shit when this is going on:

    Buried in the thousands of pages of the health care bills drafted by Democrats in the House and Senate is a provision to protect insurance companies from legal accountability for benefit decisions that cause injury or death to patients, Republicans warned on Wednesday.

    “You can sue your doctor for malpractice if he makes a mistake practicing medicine, but you cannot sue your insurance company when it makes a medical decision,” Rep. John Shadegg (R-Ariz.) said at the press conference near the steps of the Capitol. “That’s just wrong.

    1. Hey, even rope sellers don’t give the rope away. You have got to give them something.

  2. I totally agree. First, genetic determinism, at least with regard to behavior, is a crock. Second, if someone has a genetic predisposition to a disease or in rare cases like Hunington’s disease where it is an absolute marker; people are better off knowing and planning for it. If I had a genetic predisposition to mental illness, I would want to know so I could avoid fathering children.

    And if I don’t want to know, just throw the damn envelope away before I open it.

  3. “I had a genetic predisposition to mental illness, I would want to know”

    John, I’ve got some bad news for you…

    1. Hey, when you have it, it is no longer a predisposition.

  4. I keed!

  5. What if the participant is a paid participiant and part of the payment is for exclusive ownership of the resulting data by the researcher?

    Other than that instance I think I agree with you Ron.

  6. A few years, I had a lumbar MRI scan performed. Shortly afterward I was going to a pain doctor where he would read the radiologist’s report on it and go from there. But when I got the scan done, the tech would not let me see it on the screen. Like I would even know what I was looking at – it would have been interesting to me, that’s all. Pretty stupid. I should be able to see it for over a grand.

    1. In NY you are not allowed to have any test done without a prescription and are not allowed to get the results, they need to be seen by your doctor.

    2. I’ve had 2 MRIs, 3 discograms 2 myelograms and a bonescan in the last few years. They always give me a disc with the images and a typed report to take to my doctor. I have made a habit of copying the discs at home. Like you, I’m not sure how to read them but there are places on the web that help with that. It has given me a better understanding of the condition of my back and makes for more intelligent visits with my doc.

      1. I had a CT scan earlier this year and I got to see that. Now I know what I would look like if I was sliced a bunch of times like that horse in the Jennifer Lopez flick…what was the name of that one?

        1. Gigli.

        2. The Cell.

          1. Thank you. And SF, that’s Whitney Houston you’re thinking of, not JunkInTheTrunk.

            1. One day you will realize that I was more right than you could ever know.

              1. I’m sorry, I had that one confused with Glitter, which is still in the IMDB bottom 100.


      2. If the X-ray, CT, MRI, or whatever machine is even remotely modern, the images should be DICOM files. Googling “dicom viewer” should hook you up.

        To the point at hand, though: I agree with Mr. Bailey’s assessment. But what’s the best way to make sharing pertinent information a standard practice? I know that there’s a general aversion to legislation on Reason, even when there’s agreement about what’s best.

        Would it be worthwhile for an interested group of researchers to hire some lawyers and draft a freely-available boilerplate contract for research subjects? Something like a Creative Commons license– anybody can use it, and it ensures certain rights and responsibilities for both parties involved?

        1. when I got my lower back and neck scanned with an MRI they gave me a copy of the records and let me see the screen. I am pretty sure you are entitled to access your complete medical records, one law to look up would be the HIPAA law.

  7. In Michael Crichton’s novel Next he writes about people having disease resistant genes being patented by the doctors who discover them. The patients then have no rights to their own bodies (in the novel).

    1. cmace: If you’re interested you can check out my review of Crichton’s NEXT here.

      1. You Sugarfree’d the link.

    2. cmace and all: Apparently html tags don’t work so well in the new system. The URL is:…..JhYzZhYTA=

      1. “Apparently html tags don’t work so well in the new system”

        New here?

  8. First, genetic determinism, at least with regard to behavior, is a crock.

    Your genes have determined that the future is going to piss you off.

    1. No they haven’t. It is a logical fallacy. If genes determine our behavior then we have no free will. Since we have free will, genes can’t determine our behavior. There is no such thing as a “presdisposition to behavior”. What bullshit. If I have ability to ignore whatever ever urges my genes give me, then my behavior is my own and there is no genetic determinism even if I give into my urges. You can’t say that my genes determine my behavior accept when they don’t.

      1. Your genes only make you think you have free will.

        I kid, but in reality it’s probably not as either/or as you make it seem. Genetic makeup may encourage you to toward some behavior or discourage you from others.

        1. I am sure it can. But, since I have the ability to ignore it, it really doesn’t matter.

  9. Hey Ron, I remember your talking about how you had your genes mapped by some private firm. I also remember that you were going to write an article about it.

    Did I miss it? Or have you not received the info yet?

    1. ev: Rest assured, my editors are asking the same question. 🙁 Soon, real soon.

  10. Damn, Ron, you sugarfreed the link in response to cmace.

    1. I believe TAO once called Ron out for a bad link…

  11. Ethically, I would say you should get any info they can gleen from your DNA, but if you sign a waiver saying they can have it and not tell you squat, you’re SOL. If you think you may potentially want it, don’t sign a waiver.

  12. Not to be cynical, but I bet that once the g’mint is in charge of health care, they’ll come up with some very compelling reasons the citizens should not have access to their genetic test results.

    Anyone want some of this action?

  13. Ron, you’re the science expert at Reason. Can you come up with a good excuse for the web people to go back to the old way, such as threaded comments raise my friggin’ blood pressure?

      1. I think a look at the average number of comments per article before and after hiring Satan’s Web Consulting Inc. might persuade them.

        1. There were more comments in October than any month before. Thanks everybody for participating in the site!

          1. Hey Alissi, can you tell me why the site no longer ever remembers my info, and every time I post it redirects to a blank page and I have to go to the H&R home page again? Little help here?

  14. So, brotherben, what you are saying is we should all stop commenting so it’s so obvious even a politician could figure it out?

  15. The only thing researchers should be required to do is honor an agreement to provide you with genetic data.

    They created that data. It is theirs. If they want to give it to you, fine. If they agree to give it to you, fine. If they want to sell it to you, fine.

    If they don’t want to do any of those, I don’t see why they should have to.

    I am open to arguments that you have some kind of ongoing privacy interest in the data that might limit further disclosure, but a right to the work of others? I don’t think so.

  16. withholding medically useful (or even simply intellectually interesting) information from research subjects even if they request it ? is ethically problematic

    With all due respect, what is magic about *medical* information? A lot of useful/interesting info is withheld from us “research subjects”, if you catch my drift.

  17. My orthodontist once told me that a cast of my teeth, along with casts of all his patients, was kept in storage somewhere indefinitely. I kinda wish I had a copy; it’d make a neat paper weight, and could be fun at parties.

    I also sometimes wonder about the place that keeps all those casts. Thousands of disembodied maws, locked up in crates in a vast warehouse like the one from Indiana Jones

  18. Thanks Ronald.

    I wanted to note that this is not a controversy in the abstract. The debate is currently playing out in the context of Kaiser Permanente’s massive genetic database which, as of the moment, is not designed to return genetic information to the Kaiser patients that serve as its research participants. (Readers in Northern California may have already been invited to participate in this study.)

    For more on this story please see: http://www.genomicslawreport.c…

    Dan Vorhaus
    Editor, Genomics Law Report

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