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DNA From the Dead: DNA Banking is Legal, but is it Ethical? Part I

The field of genomics is exploding. Every day, the mysteries of our genome are revealed and we learn more and more about the power of DNA. Soon, with affordable whole-genome sequencing, we will be able to analyze our own personal genome for clues about our ancestry, our propensity for disease, and insight into our body and our personality. In fact, this is already well underway.

Undoubtedly, each of us will be faced with a decision in our lifetime - do we want to learn the secrets of our genome, or do we want to live without that knowledge, as all of our ancestors have done for millions of years. This decision is a personal one, and at this point I don’t think there’s any right or wrong answer.

But what about those who are unable to make that decision? For example, an infant is unable to give consent for genetic testing, but many states in the US routinely test newborns for genetic disorders. Today and tomorrow we will be examining another group of individuals who are not able to consent to genetic testing – the recently deceased.

DNA Banking

There are number of companies in the US and throughout the world that offer DNA retrieval from recently deceased individuals. Kauber-Miller Funeral Home in Pataskala, Ohio has been using DNA Connections to offer storage service to bereaved families. In a 2004 interview, Mr. Miller stated that the service has been popular:

“About 30 percent of the families take advantage of it,” he said. “It seems to be a generational thing, with younger people more in favor of it.”

In 2004, the cost was $295 before embalming and $459 after embalming. Before embalming, a blood sample is dried on specially coated cards and stored inside a vault at DNA Connections’ headquarters. After embalming, a skin sample must be taken to retrieve the DNA.

Perhaps surprisingly, the ability to store a deceased person’s DNA has been around for more than ten years. In 1998, an article in the Huntington’s Disease Lighthouse newsletter described a DNA storage service from Cincinnati-based DNA Analysis, Inc. For $350, the company would take hair, blood, and cheek swab samples for long-term storage. The family would also receive a “genetic fingerprint”, although it is unclear exactly what that phrase means.

The ability to store DNA from both the living and the recently deceased is increasing every day. The City of San Bruno in California recently posted online instructions for banking the DNA of children in your own freezer. Although the instructions were provided to assist in finding or identifying lost relatives, it could be used for anyone. Even retailers have entered the market, offering a home DNA storage kit for only $29.99.

In 2006, the New England Historic Genealogical Society published an article by Edwin M. Knights, M.D. entitled “DNA Banking for Medical Information.” In the article, Dr. Knights makes the following comment:

“For an increasing number of disorders there is urgent need to store DNA from elderly members of the family or affected persons whose life expectancy is reduced. We would go much further, as we feel strongly that DNA information is becoming so important that DNA should be banked from every elderly adult who has had children. This is particularly true because so many are now choosing cremation rather than traditional methods of burial, in which case DNA evidence is lost forever. It is becoming increasingly important for descendants to know what DNA they have inherited in order to modify or prevent subsequent serious medical conditions in future generations. Of course DNA also provides a priceless resource for genealogical pedigree studies. This objective can be achieved easily if we enlist the cooperation of funeral directors.”

DNA Storage in Other Countries:

Storage of a deceased person’s DNA is also being offered in the UK. According to Avi Lasarow, founder and director of DNA Bioscience Today, “in the UK the cremation rate is 73%, and the public need to be aware that there is a real need to store this vital piece of medical information.”

Interestingly, Mr. Lasarow also suggested that Funeral Homes might be liable for NOT offering DNA storage. “Given the importance of DNA preservation and knowing that upon cremation and most likely embalming that there will be no possibility of getting samples, we are beginning to wonder if there is an implied responsibility among funeral directors to make families aware of this service,” Lasarow said.

So it appears that DNA storage is being offered by funeral directors and retailers around the world. But it raises a few important questions – how necessary or useful is a dead person’s DNA, and is the retrieval of DNA from someone who has not given consent ethical? We’ll look into this tomorrow.

Companies that Offer DNA Retrieval and/or Banking:

1. DNA Safe Storage

2. DNA Connections

3. DNA Analysis

4. Genetic Identity

5. GeneSaver

6. PRO-DNA

7. DNA Diagnostics Center

8. DNA Products

9. Heritage DNA

10. DNA Genetic Connections

11. Legacy Biogenetics

12. Beta Genetics

13. Affiliated Genetics

14. GeneTree

15. GeneLink

16. DNA Bioscience

For More Information:



  

3 Comments

  1. Posted 28 August 2007 at 7:34 am | Permalink

    Great article Blaine. I suspect that one day in the not too distant future attorneys will have a “standard” DNA release form/permission form that will be included with estate planning arrangements (along with a will, a living will, instructions for organ donation, etc.). When will this happen? Right after the first law suit where someone wins a big settlement because their loved one cremated and they were/were not informed that DNA banking was an option.

  2. The DNAcowboy
    Posted 29 August 2007 at 3:30 am | Permalink

    Also remember, scientifically speaking, today’s technology allows preservation of DNA integrity for 12-15 years only !!! After that, DNA will be, or will start to be degraded and worthless. It’s hard to find serious publications mentioning more than this 12-15 years limitation.

    Don’t expect too that your preserved DNA with today’s technology could be “upgraded” with upcoming technologies for preservation. It should be preserved right now with a longer term preservation technology.

    Air, water, humidity and many other factors start the degradation process as soon as your DNA is “preserved” by today’s market offerings.

  3. Amy
    Posted 5 March 2008 at 8:14 pm | Permalink

    In my Composition 2 class at University of South Florida, I am researching the ethics of DNA banking and its effects on the world and the society. I talked about the benefits of DNA Banking in the forensics department. They can easily find a criminal faster and more conveniently using DNA banking to find any traces of DNA the criminal might have left and looking for its match in a DNA bank. Another use of DNA banking- or DNA profiling- is to find a missing person or reunites a family that was split apart. It is a good way of tracing DNA of blood relatives in order to make family connections, which usually results in a family coming together. Also, we can use this new technology to identify bodies that were left from a disaster such as an explosion or a fire. They are usually so damaged you cannot identify them. With DNA banking you can now use their hair of skin to find out who they are. All of these advantages to DNA banking are logically and ethically correct and make the world a better place. Even if we find a disadvantage every now and then such as DNA banking being a violation of privacy or finding a person who does not want to be found, these disadvantages are only small reasons in an large field of possibilities. They can be adjusted to fit what the people find ethical and that would eventually benefit everyone and make the world a better place.

12 Trackbacks

  1. […] at The Genetic Genealogist looks at the ethics of storing DNA from deceased people. On a related note, how about collecting DNA from strangers for genealogical purposes, […]

  2. By Genetics and Health on 28 August 2007 at 7:44 am

    links from TechnoratiRecent CommentsThe Genetic Genealogist - » DNA From the Dead: DNA Banking is Legal, but is it Ethical? Part Ion Saving Family Members’ DNAGene Genie #14 at MicrobiologyBytes « ScienceRoll on Gene Genie #3: What’s in Our Genetic Future?kendra on Gum chewing goes back 5,000 yearsBarry on Stalin’s army infection treatment helping fight against MRSA

  3. By Genome Technology Daily Scan on 28 August 2007 at 1:51 pm

    Kramer auto Pingback[…] at his Genetic Genealogist blog, Blaine Bettinger asks whether it’s ethical to collect and store DNA samples from dead people. […]

  4. […] Yesterday we saw that many funeral directors offer DNA retrieval and storage as one of their services. Today, we’ll look into the WHY of DNA storage, and bring up some of the ethical questions it raises. […]

  5. By Roots Television | Megan's Roots World on 29 August 2007 at 5:25 pm

    links from TechnoratiPart 1Part 2 Personally, I’m for it. You might think that’s because of my borderline obsession with genetic genealogy — and that’s definitely a factor. But I’m more interested in what might be possible medically in the not-too-distant future — and how

  6. By This Week in CGREAL on 7 September 2007 at 3:18 pm

    Kramer auto Pingback[…] DNA From the Dead: DNA Banking is Legal, but is it Ethical? Part I (The Genetic Genealogist ) “There are number of companies that offer DNA retrieval from recently deceased individuals. Kauber-Miller Funeral Home in Pataskala, Ohio has been using DNA Connections to offer storage service to bereaved families. …” […]

  7. By www.cancer-genetics.com on 9 September 2007 at 1:20 am

    links from Technoratithe first blog carnival about cancer research. If you still smoke and sooner or later develop a lung cancer - don’t worry - you can bank your DNA just before a funerals. A comprehensive list of labs providing this service is listed here (byGenetic Genealogist). Letters from Editor to a Host. I have received very informative letter from editor Bertalan - that list will fulfill you for sure (some of the links appear repeatedly, but it represents the way our genome is organized:):

  8. Kramer auto Pingback[…] the deceased and questioned the ethics of biobanking without informed consent. In the first post (August 28) Bettinger writes:DNA storage is being offered by funeral directors and retailers around the world. […]

  9. By RootsWeb: GENEALOGY-DNA-L Re: [DNA] DNA Storage Kit on 16 October 2007 at 10:32 pm

    Kramer auto Pingback[…] Blaine Bettinger recently had a blog entry about some alternatives (long URL, ends in part-i ) http://www.thegeneticgenealogist.com/2007/08/28/dna-from-the-dead-dna-banking-is-legal-but-is-it-eth... One resource he didn’t mention was DNA banking of a sample obtained from whole blood. It might […]

  10. […] in response to a recent story in Parade. I talked about this briefly back in August (see “DNA From the Dead“), and I’m working on a post about “Discarded DNA and the Constitution”, so […]

  11. By marshdna/info on 3 February 2008 at 10:30 am

    Kramer auto Pingback[…] DNA.  If DNA is stored, it is a cheap insurance policy which enable future testing.  http://www.thegeneticgenealogist.com/2007/08/28/dna-from-the-dead-dna-banking-is-legal-but-is-it-et…  (DNA Storage) http://www.preventiongenetics.com/  (Method for good quality long term […]

  12. Kramer auto Pingback[…] … http://www.geneticsandhealth.com/2006/08/31/collecting-ce... [Found on Yahoo! Search] 2. DNA From the Dead: DNA Banking is Legal, but is it Ethical? Part I " The Genetic G… … of companies in the US and throughout the world that offer DNA … The Genetic Genealogist […]

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