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
DNA Banking
There are number of companies in the
“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 fingerprintâ€, 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
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.â€
DNA Storage in Other Countries:
Storage of a deceased person’s DNA is also being offered in the
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:
3. DNA Analysis
5. GeneSaver
6. PRO-DNA
8. DNA Products
9. Heritage DNA
12. Beta Genetics
14. GeneTree
15. GeneLink
16. DNA Bioscience
For More Information:
August 28th, 2007 at 7:44 am
Recent 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
August 29th, 2007 at 5:25 pm
Part 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
September 9th, 2007 at 1:20 am
the 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:):
August 28th, 2007 at 4:36 am
[...] 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, [...]
August 28th, 2007 at 7:34 am
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.
August 28th, 2007 at 1:51 pm
[...] at his Genetic Genealogist blog, Blaine Bettinger asks whether it’s ethical to collect and store DNA samples from dead people. [...]
August 29th, 2007 at 3:01 am
[...] 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. [...]
August 29th, 2007 at 3:30 am
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.
September 7th, 2007 at 3:18 pm
[...] 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. …” [...]
October 3rd, 2007 at 11:32 pm
[...] 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. [...]
October 16th, 2007 at 10:32 pm
[...] 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 [...]
October 31st, 2007 at 8:29 am
[...] 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 [...]
February 3rd, 2008 at 10:30 am
[...] 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 [...]
March 5th, 2008 at 8:14 pm
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.
April 18th, 2008 at 1:35 am
[...] … 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 [...]
September 7th, 2008 at 1:36 am
[...] Blog. 3 October 2007. In an informative, two-part post at the end of August, Blaine Bettinger of The Genetic Genealogist introduced DNA banking for the deceased and questioned the ethics of biobanking without informed [...]
November 3rd, 2008 at 1:53 pm
[...] prerequisite for fossilization is that the dead body is quickly and …www.answers.com/topic/fossilDNA From the Dead: DNA Banking is Legal, but is it Ethical? Part I …“Given the importance of DNA preservation and knowing that upon cremation …. In the first post [...]
May 5th, 2009 at 9:14 am
[...] DNA From the Dead: DNA Banking is Legal, but is it Ethical? Part I”Undoubtedly, each of us will be faced with a decision in our lifetime – do we want to learn the [...]
October 7th, 2010 at 4:20 pm
my son was born in 1967,at that time i was in a coma and the father was never put on to birth certificate and dna was never established.as time went by the father and i lost contact w/each other and 38 years ago the father committed suicide. after this happened i ask the grandfather of my son on his dads side to help me establish that his son was the father and he would not cooperate. i told my son about his father when he became of age,he was and still is disturbed about this. all my son and i want is proof of dna ( that he is the father) stephen delmas mayle. his remaining family knows he is the father and i do too! my son has 2 stepbrothers that belong to his dad.HELP US IF YOU CAN PLEASE
March 11th, 2011 at 12:11 am
[...] 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 … [...]