Last month, I explained the several kinds of DNA and how the type of ancestral information they could provide varies. This month, I look forward, to the ramifications of new technology that examines DNA. There are now several companies offering DNA testing services and these are being utilized with growing frequency by individuals interested in their family history. Unfortunately, there are many issues to understand before one pursues this route of inquiry.
Genetic testing is becoming more affordable all the time. Genealogists are increasingly trying (and recommending to each other) this method of examining ancestry. Companies offering testing are aggressively marketing their services. These factors are intensifying the pressure on family historians to do a DNA test. However, there are serious risks to testing, on individual and societal levels, which are not always fully considered by the public. Many of these were discussed by Abby Lippman, a professor emerita at McGill University, as published in the Globe and Mail.
Risks to the individual purchasing the DNA test include misunderstanding the true meaning of the results for their health and their genealogy studies, having to cope with potentially traumatic information, and placing their personal information at risk. Interpreting the results that one has paid for is not always easy. There are serious limits to what the genealogical information can provide about the details of one’s family tree (see last month’s column for the basics); for some customers testing is a rip-off since they don’t really need the data to examine what they are interested in. Interpreting the health data that is often provided along with the genealogy data is difficult to do and really does require a medical doctor’s assistance. How is one to know whether a specific risk measurement for a particular disease is significant or not? Is the effect of a ‘DNA risk factor’ compensated for with proper exercise, nutrition and health practices? Educated interpretation is required by the consumer but not provided by the testing company. A customer could suffer from increased stress when they really have nothing to worry about, or conversely, could not take necessary action if they mistakenly downplay serious hazards.
The potential that a customer could be forced to deal with life-changing information also needs to be considered. DNA is a complex thing – what if a potentially serious health risk was discovered (and subsequently verified by a medical professional)? On the other hand, the genealogist searching for family history data, could be shocked to discover that a relative had lied about their family composition, forcing a re-evaluation of one’s very identity. One article I read had the title, ‘With genetic testing, I gave my parents the gift of divorce’. Is looking for more information always worth the danger of uncovering family secrets?
Another risk that is often not considered by consumers in our day and age is the risk to our personal data. Companies like Facebook, which have already been heavily criticized for their use of their customers’ personal information, are interested in our demographics and what we like or dislike. The company that you hire to do your DNA test will have a detailed record not of your ethereal and changeable feelings but of your actual physical being, and you have no control over what they do with your information. Even if you could find an altruistic and trustworthy company to deal with, who knows who will put them out of business and take over their databank. I found another well-phrased consideration in the article, ‘Genetic testing brings families together and sometimes tears them apart’:
In reality, of course, DNA isn’t yours alone. It contains information about your parents, siblings, and extended family, going backward and forward. Every time you put your DNA on one of these databases, you’re also implicating all of your relatives for as long as these databases exist, whether they like it or not.
Is your curiosity about your DNA worth the potential harm to your relatives, some of whom may not even have been born yet?
Societal risks caused by DNA testing include increased pressure on already stretched financial and medical resources, as well as potential exploitation of workers and consumers. As more people take DNA tests, the impact of individual needs for medical consultations or individual requests for medical diagnostic procedures places strain on a health system that already has serious difficulty meeting the needs of the public in a timely manner. Also, once more people have had DNA testing done, it may become common for employers or insurance companies to demand that the DNA test results be revealed to them. In the future, you could suddenly find it difficult to get health or life insurance coverage if some portion of your DNA suggests that it would be unprofitable to underwrite your policy. In addition, think of the situation from the DNA testing company’s perspective: the high costs of the technology to run these tests will take a long time to offset at the price-point of mass-marketed tests. The real money is to be made by building a database of DNA information and selling that to researchers or others. Sadly, Canada has no regulations or laws to prevent genetic discrimination nor to ensure our genetic privacy.
New DNA testing offers the opportunity to know oneself in greater detail than ever before imagined, but testing has several serious risks to consider, for both the individual consumer and the society as a whole. Do not make a hasty decision to buy the latest genealogy toy, without first considering the larger consequences. If your concern is discovering health risks, you are better off consulting your family physician, someone who knows your medical history, as well as your lifestyle and personality. If you are investigating your genealogy, be sure that your research questions cannot be better answered by traditional methods of searching through historical records. Those looking for unknown family members such as birth families or adopted children may have more success with DNA testing than with documentary research, but be prepared to deal with difficult revelations and the fallout from them. Traditional adoptive assistance programs usually offer counseling services, but with a self-administered DNA test you are on your own. The new technology of DNA testing is tempting to embrace, but responsible use of any new technology is important and for this type of technology is critical, because your actions could have implications that affect your loved ones and reach far into the future with its unfathomable possibilities.
This article was originally printed in the Bergen News and is being reprinted with permission.