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Family DNA Questions

LAWS & Concerns:


Obviously most people are concerned about privacy issues regarding their DNA. This makes sense and is a reasonable issue. Concerns are understandable for many different reasons, but genealogy DNA testing is very safe, secure and can only help your family. This type of project is for informational purposes, and is not meant to find out things about you or let out any information about you to the world. The theme should be that a well-informed genealogist saves hundreds of hours of research time in the future. You should understand that y-DNA chromosome testing involves only noncoding regions of the y chromosome. Therefore, there are no possibilities of discovering genetic diseases or special information about you. The privacy concerns that would apply to testing for medical diseases, such as the possibility of discrimination in the workplace, etc, do not apply to this type of testing. Other questions come to mind such as the following:
  1. What happens to my DNA sample after a company is done?
    First of all, swabs, hair or blood samples are sent out in kits to consumers. The consumer then swabs the inside of his or her cheek, capturing DNA found in buccal cells. Then the swab and the DNA on the swab are sent to the lab where all of it is used up in testing. In the case of a blood test, medical staff must be involved.
  2. What happens to my DNA results after a company tests me and gives me a copy of the results?
    The results are kept on file, in both computer and hard copy formats. DNA results should either go into a nonweb database with a number but no name, or could go onto a web database provided sufficient security precautions were taken.
  3. Do my DNA results stay in a database, presumably for me to have other tested clans send in their DNA for comparison with mine?
    This is an option. However, consent will have to be given if you would like your DNA used in comparison studies with other individuals. This would need to be done on a legal consent form.
  4. Are these databases secure against hackers and other problems?
    These databases are not accessible via the internet. No databases are 100 percent secure, but what helps is if the databases are either offline or on secure sites. Any data that would be posted on the internet would be done using only test numbers, never any names.
  5. What does the Everingham Family History Archives plan to do with results?
    Our family web site wants to label people by numbers only and post some results to compare family lines. As an example "subject 1 from the James UEL line", "subject 2 from the James UEL line".... "sublect 1 from the John of NY line" ... etc. We would list results in a chart of numbers somewhat like a census reading to compare results and prove or disprove links between family lines. As an example:

    Everinghim Family Line
    Marker 1 2 3 4 5 6 7 8 9 10 11 12  
      DYS#
    Part or
    Test
    ID#    		 3
    9
    3    		 3
    9
    0    		 1
    9
    *    		 3
    9
    1    		 3
    8
    5
    a    		 3
    8
    5
    b    		 4
    2
    6    		 3
    8
    8    		 4
    3
    9    		 3
    8
    9
    i    		 3
    9
    2    		 3
    8
    9
    ii    		 Ancestor
    #
    A137453 13 26 14 11 12 14 12 12 11 13 13 29 0001


  6. Does the company sell my DNA results or any other personally identifiable information?
    The DNA and the DNA profile will never be sold or accessed by another party. Think about it for a minute. Companies are in business, and they get their business by referrals. If customers found out that companies sold their DNA data, the companies would not be in business very long. State law may also regulate this area. Currently there is no federal (U.S.) statutory law, but there are regulations under the Department of Health and Human Services (45 CFR 46:101 et seq.) regarding privacy.
  7. What other steps does the company take while testing to keep my DNA results and my identity separate?
    The specimens as they arrive in the lab must be numbered. The number then would correspond to a name, and the actual tester would only have a sample with a number on it--never a name. Very few people would actually know who the customer is and what the results are.
  8. Are any other tests, such as those looking for medical genetic diseases, being run on my DNA?
    No tests other than DNA profiling will be done on the specimens. To analyze for genetic diseases, many tests would have to be run. That costs money to staff the lab, more supplies, more bookeeping, increased overhead.
  9. Are there any laws that pertain to genetic testing that protect the consumer?
    Yes, while there is no U.S. federal statute on the subject (attempts in 1992 and 1996 failed), the U.S. federal government has developed regulations (45 CFR 46:101 et seq.) to deter employers, insurance companies, or any other entities from discriminating against individuals based on their genetic makeup. There currently are also laws in some U.S. States.
U.S. FEDERAL REGULATIONS
The genetic privacy issue actually consists of at least 3 subissues: 1) genetic information as being private, 2) confidentiality of genetic information, and 3) the use of genetic information, even if authorized, can result in discrimination or stigmatization. Genetic privacy issues are not currently regulated by United States federal statute. While there are some U.S. Department of Health and Human Services regulations that regulate this area [see 45 CFR 46.101 et seq. (Code of Federal Regulations), most regulation in this area is at the state level.



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