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 BankingThere 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:
1.
Genethics.ca
2. NEJM
3. National Society of Genetic Counselors