DNA: life after death

Collecting DNA samples at death

DNA testing was something that could always be done.

Down the road. Someday. When there was time.

And then, suddenly, there was no more time.

So reader Pat Rand and her husband turned to the funeral director they had chosen for his mother’s funeral and asked for help in getting that last precious sample of DNA.

And ran into a brick wall.

And so, Pat asks, “Do the next of kin of a deceased person have the right to ask a funeral director to take a DNA sample after death? It wasn’t that my mother-in-law wouldn’t have given one if we had asked earlier, it’s just that suddenly I realized it was the last chance we had to get one. The funeral director went absolutely ballistic on me, did everything but froth at the mouth when I asked.”

Oh brother. Was that funeral director ever wrong. Because Pat, her husband and their family should have gotten that sample taken, they should have had the chance to preserve that last genetic connection with the older generation that would live on after their loved one’s death.

And all it would have taken is what you see here: a couple of q-tips and a paper bag. No drawing of a blood sample. No surgical taking of a tissue sample. Just a couple of q-tips and a paper bag.

Let’s deal with the practicalities first. Obtaining a DNA sample from a deceased person is a very simple thing to do. I put the question to Bennett Greenspan, president of Family Tree DNA, the one DNA testing company for genealogy that doesn’t require saliva for its testing.

And he advises that all that’s needed is to have the mortician use a q-tip and scrape inside the cheek of the deceased. Getting one sample from each side of the mouth is best; it gives the greatest chance of collecting enough DNA on the swab.

But, Greenspan says, there’s nothing difficult about handling the swabs after the samples are taken: “Just let the swabs air dry, place in a paper baggie, not plastic, and mail to us with instructions.” (You can contact Family Tree DNA for more information using the contact information here.)

Now let’s turn to the law.

There is no law anywhere in the United States that I could find that bars the next-of-kin from authorizing the taking of a DNA sample from their loved one except, perhaps, in the extraordinary situation where the loved one had expressly stated in writing beforehand that he or she did not want DNA testing to be done.

How could there be such a law? The next-of-kin get to decide what’s done with the body: will there be a burial? A cremation? And every state in the United States — without exception — allows the next-of-kin of a decedent to consent to organ donation.1

And this is pretty much the law around the world: either the next-of-kin can consent to what happens with the body parts or, in some jurisdictions, consent of the deceased is presumed.2

Compared to this grant of authority, taking a tiny bit of DNA on a q-tip is small potatoes. It’d hardly be illegal to do that when you can give away eyes, organs — even the entire body.

As noted, the one exception is where the person, when living, refused to consent to DNA testing. In the organ donation scenario, no means no and if your loved one has a written directive that says no, the law won’t allow the family to override that.3 (And conversely there are now laws in some states that prevent a family from overriding the loved one’s written directive that says yes.4)

American laws don’t speak specifically to that situation for DNA testing — but British laws do. The Human Tissue Authority there dictates that the express wishes of the person, while alive, will control (if the person had been asked and said no, that no remains in force). If the person never was asked, then the next of kin may certainly act.5

And in states that do have laws about genetic testing generally, there’s usually some provision for decisions by a legal representative of the tested person. For example, Oregon has one of the toughest genetic privacy laws in the nation, and it authorizes consent to be given by a person’s personal representative — meaning someone appointed by the court or, in order, the person’s spouse, adult children, parent, or adult siblings.6

This authority of the next-of-kin to act is generally recognized by funeral directors and others involved in the death process around the United States. In Ohio, the Cuyahoga County Medical Examiner accepts the consent from the decedent’s legal custodian and/or next-of-kin.7 The National Funeral Directors Association has an authorization form (online at the Virginia Funeral Directors Association website) for the collection of DNA samples, to be signed by the spouse or next-of-kin.

And by 2013, DNA testing was such a routine part of the funeral business that exhibitors at the industry’s 2013 convention offered preservation kits for sale.8

Moreover, because the funeral home represents the last clear chance to obtain a DNA sample, some industry representatives are advising that funeral directors may face civil liability if they don’t tell the families that they can get a sample at that time. One industry lawyer even advises funeral homes that they should get customers to “sign a form releasing the funeral home from any liability for claims that a DNA sample should have been taken.”9

It’s a darned shame that the Rands’ funeral director went absolutely ballistic when asked to get a DNA sample in this case. His actions deprived that family of a part of their genetic legacy that can’t be completely recovered by testing other family members. The family’s wishes should have controlled.

For the rest of us who may face this situation in the future, a word to the wise: get testing done now. But if time runs out, present the funeral director with your own signed authorization form to take a DNA sample … and a few q-tips and a paper bag.


 
SOURCES

  1. See “Uniform Anatomical Gift Act (1968),” “Anatomical Gift Act (1987),” and “Anatomical Gift Act (2006),” National Conference of Commissioners on Uniform State Laws (http://www.uniformlaws.org : accessed 29 Jun 2013).
  2. See Table 1, Legislation by nation, in Rosenbaum, et al., “The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations,” Nephrology Dial Transplantation (June 2012) 27(6): 2533–2546; reprinted online, National Library of Medicine, National Institutes of Health (http://www.ncbi.nlm.nih.gov/ : accessed 29 Jun 2013).
  3. See generally “The Donation of Human Organs,” Stanford Encyclopedia of Philosophy ( : accessed 29 Jun 2013) (“Even if the family want to donate, the deceased’s objection will veto retrieval”).
  4. See, e.g., N.Y. Public Health Law § 4310. Under that law, “you become a designated donor. It means that you are giving legal consent for the recovery of your organs, tissues and eyes for the purposes of transplantation and research at the time of your death. Your legally binding decision may not be overturned by any other person.” “What do you mean when you say this is a registry of legal consent?,” Frequently Asked Questions About the NYS Registry, New York Organ Donor Network (http://www.donatelifeny.org/ : accessed 29 Jun 2013).
  5. See “Consent requirements – Part 2: Tissue from the deceased,” Code of practice, Human Tissue Authority (http://www.hta.gov.uk/ : accessed 29 Jun 2013).
  6. See generally Oregon Rev. Stat. §§ 192.531-192.549, Genetic Privacy. And see Oregon Rev. Stat § 192.573, Personal representative of deceased individual.
  7. Deceased Patient Custodian/Next-of-Kin Consent for DNA Testing,” Cuyahoga County Regional Forensic Science Laboratory (http://medicalexaminer.cuyahogacounty.us/ : accessed 29 Jun 2013).
  8. See “DNA Preservation Kits at ICCFA,The Family Plot blog, posted 22 Jun 2013 (http://thefamilyplot.wordpress.com/ : accessed 29 Jun 2013).
  9. Harvey I. Lapin, “The Legal Obligation to Disclose DNA Sample Requirements to Families,” International Cemetery & Funeral Management, March-April 2003, reprinted at dnaconnections.com (http://www.dnaconnections.com/ : accessed 29 Jun 2013).
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8 Responses to DNA: life after death

  1. Kelly Wheaton says:

    Judy,

    Wonderful information as always. I am printing this out!
    Kelly

  2. Shelley says:

    I love it…the q-tips and the bag. I wish we would of thought about this years ago! Thanks

  3. Karen says:

    When my mother passed, I simply kept her hairbrush and put it in a plastic bag. Her sister (still living) has already been DNA tested for genealogy purposes, but should I ever want to submit a sample from Mom, the hair samples should suffice.

  4. Debi Austen says:

    Ugh. My mother died 6 weeks ago and I never even thought of getting a DNA sample. And since she was an only child I think I’ve completely missed any opportunity I might have had. :-(

  5. Thanks. Here you’ve made the law crystal clear, again. Maybe eventually this right of families will be generally known.

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