20 September 2008

DNA Privacy Issues

Much of the general public may tend to be fearful of new advances in technology when it comes to something as personal as our own DNA. With the advent of George Orwell’s book 1984, many people may not trust the government or some of their agencies with such intimate information. It is the duty of the Genetic Genealogist to understand DNA testing and to help alleviate those fears.

Alleviating Fears

Often you may find people who have concerns about DNA Testing. They feel that the world will know more about them than they do about themselves. They are concerned that doctors and insurance companies and possibly employers will use the result of the test against them, perhaps forbidden coverage or restricting them from being hired. Others may be concerned that our government may use the results against them, especially in the criminal justice system.

In order to get a relative to test, you must alleviate their fears. With knowledge and understanding, you can at least mitigate their reservations and explain how testing for genealogy is not harmful.

Sharing Haplotypes:

The most important piece of information is to know and understand that your DNA signature (haplotype) which is used for genealogical purposes is not just yours. If you are a male, the test results is either an exact match or it is extremely similar to all the males in your all male line (top line of a pedigree chart). For the case of your mitochondrial DNA (female DNA), an exact match would be for all the females in your all female line (bottom line of the pedigree chart) for thousands or tens of thousands of years.

For example: You and your full-blooded brothers would have the same results on the tests used for genealogical purposes in both the Ydna and the mtDNA. You, your brothers, your father, paternal grandfathers, paternal uncles and cousins on your all male line would have the same DNA signature (haplogroup). There could be minor mutations with some of these relatives, but not all. Therefore, it is impossible for anyone to determine that a specific haplotype is really yours…you share it with others. Women are the same as they share their haplotype with their sisters, brothers (mtDNA only), mothers, grandmothers…all the women in their all female line.

Someone approached me wanting to know if they could test Ydna to determine if two men were the father of a child. This can be done easily unless, those fathers are related on an all male line. In this case, they were; they were a father and son, each impregnating the same woman and each producing a child. Those children would have the same Ydna and mtDNA results. ONLY in the rare case that the son had a mutation that the father did not have could anyone determine whose son was whose.

So each person does not have their own particular DNA signature when it comes to testing for genealogy.

Testing Company Privacy:

Some testing companies keep your DNA sample for a certain number of years while others destroy it after they determine the results. The reason for maintaining the sample is so the owner of the DNA can request other testing. However, anyone can ask that the company destroy their sample at any time.

Testing companies take your name, but when they send the sample to the lab for testing, you are only a number.

Testing companies uphold your privacy as any leaks of data would put those companies out of business rapidly. There are networks of Genetic Genealogists who would see to this.

Insurance Companies:

The type of DNA data an insurance company needs is not available from the markers used for testing in the field of genealogy. Insurance companies need the autosomal DNA (atDNA) as it contains your health issues. Genealogy research does not want the atDNA as it is too inconsistent to help with research. Autosomal DNA re-combines with every conception so you and your sibling would have different atDNA unless you were identical twins. An insurance company’s source would be through a doctor, and the tests would need to be conducted by the medical industry. For these reasons, an insurance company would not access Genetic Genealogy company’s databases, even if they could.

In 2008 Congress, passed GINA (Genetic Information and Non-Discrimination Act) which is now a law protecting the public from discrimination by insurance companies and employers. (For more information on this bill becoming a law see the GINA post on this blog.) The law states that as a result of a DNA test an insurance company or an employer cannot take action against a person. Again, this DNA testing would be through the medical services. However, it is nice to know that if you have a health issue that arises later, you are protected.

Criminal Justice System:

Some people fear that the justice system will obtain their DNA and use it against them. The system the justice department uses is CODIS (Combined DNA Indexing System) and is a system of genetic profiling. The markers used for genealogy are not the same ones used for CODIS, although a few may overlap. However, the way the government tests the marker is completely different than how labs doing genealogical work test them. Therefore, the result would never turn out the same.

For a more detailed explaination see the future post entitled: CODIS

In summary:

The first step in testing and in finding potential testers is to educate them and alleviate their concerns. Coming Blogs will give you more information on CODIS and provide some successfully used ideas on how to contact potential testers.

E. Aulicino
© 2007

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