A guest blog on DNA, genealogy, ethics from Dr Carolyn Huston. Carolyn, a former GP, gives regular talks and workshops on family history and medicine, particularly with focus on death certificates. Here she gives us some reflections on DNA, health, and data.
As an amateur genealogist I am a huge fan of using my DNA to research my ethnicity, to break down brick walls in researching my family tree and to understand how my far distant ancestors left Africa and moved into Europe. There are however ethical issues to consider and increasingly the genealogical world is becoming aware of them.
Once we have spat into a tube our DNA is out there in the great wide world. Who does it belong to? To you or to the company testing it? What will happen to the DNA that you have paid the company to test? Will you ask for it to be destroyed after testing, or would you be happy for the company to use it for research anonymously? Will you get a share of payment if the company gets paid for supplying your DNA to, for example, a drug company? What will happen to the DNA after you die and who will own it then? So many questions and it is all clouded by “whose DNA are you testing anyway”? Living relatives share part of your DNA so your siblings, parents, aunts, uncles, cousins, children and so many other relatives might be a little disturbed to find that part of their DNA is out there without them being aware of it. They may also be less than pleased to find that family secrets such as illegitimacy, half siblings, bigamy or sperm donation are out into the open. These are all ethical issues worthy of debate.
Another DNA hobby horse of mine is the lack of understanding of statistics which interferes with genealogists properly understanding their DNA results. Part of the results from the test is not factual, but is estimated using algorithms and statistical calculations. This is frequently misunderstood. Ethnicity, for example, varies slightly between testing companies because of the different statistical methods used. The database size is also a factor that is frequently misunderstood….a company can advertise that 7 million people have tested with their company which sounds huge, but is, in fact, a smaller population than that of London. The results from each company are only as reliable as the population being tested. If I, for example, were looking for “DNA matches” it would not make sense to use a company that is based in Russia when my family have lived for generations in Africa. The database populations are biased by virtue of their size and situation, because only relatively small numbers of people are interested in testing their DNA!
Some of the DNA testing companies test genes as well as, or instead of, non-coding DNA and can tell their customers information ranging from eye colour to their risk of heart disease and cancer. This is mixing health with genealogy and comes without the appropriate counselling that would be usual in a doctor’s surgery. I personally think that genetic testing (comparing genes) should be entirely separate from genealogical testing of DNA which uses non-coding DNA, and tests no identifiable genes. Without appropriate guidance people will misunderstand and overestimate risk of disease. It can also affect their ability to buy life insurance in Britain if the information reaches their medical records, which might well happen if they seek advice from their doctor. America legislation prevents the insurance companies from taking DNA results into account when assessing insurance risks.
A final ethical issue is the use of DNA results from genealogical companies by authorities such as the police and immigration. DNA is routinely collected for forensic purposes, but, by using genealogy DNA sites and setting up false ID, matches have led to finding relatives of offenders, and subsequent arrest of the offender. Currently these techniques are being used for major crimes such as rape and murder, but what will happen in the future as more and more people test their DNA? I do not think the law has been tested as to whether police would have access to DNA results which are supposedly held confidentially. However police can have access to other confidential material such as bank accounts and medical records with an appropriate search warrant. Another interesting ethical dilemma, perhaps!
I should now tell you that my DNA has been donated as part of the UK Biobank project. I have also tested my DNA with 4 DNA companies, and paid good money to do so, along with agreeing that my DNA can be used for research. I have uploaded my DNA results to GEDmatch.com to extend the database for “matches” in my family tree and have learnt a lot about my ancestors wanderings around the globe. I have been delighted to make contact with various branches of my family tree both here and abroad. I have not tested my DNA with the company that tests for health risks because, frankly, I ‘don’t want to know’ despite my medical background.
Carolyn Huston