GENETICS AND PRIVACY
FAQ's
Many people are
concerned about privacy issues regarding their DNA. This is for informational
purposes, and is not meant to instill any paranoia in you. The theme should be
that a well-informed consumer is a wise consumer. What you should understand is
that y-DNA chromosome testing involves only noncoding regions of the y chromosome. Therefore, there are no possibilities of
discovering genetic diseases. The privacy concerns that would apply to testing
for medical diseases, such as the possibility of discrimination in the
workplace, et seq., do not apply to this type of testing. Questions come to
mind such as the following:
1) What happens to my DNA sample after a company is done?
First of all, swabs 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.
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.
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.
5) 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. I would look for the company's privacy policy. State
law may also regulate this area. Currently there is no federal (
6) 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.
7) 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 bookkeeping, increased overhead. Come
on, now, businesses that did this would not stay in business very long!
8) 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
state laws (in the
9) As genealogists, we want our results
available to other companies so that comparisons can be made with our test
results, and likewise, that those other companies share their results of those
that they have tested. Let's take an example to show what I am talking
about. A goes and gets tested through
Company A in the
The transmission of the results of DNA identities can be handled much
like medical records, but special consent would have to be obtained before
results are shared between labs. Alternatively, results can be shared with labs
by the individuals themselves, since they will have the profiles in their
possession. On this note, we do not know if the labs have a procedure in place
to handle a request from another lab or from a customer and what it would cost.
Another approach would be to construct a huge database, or one common family
tree. Those laboratories doing DNA testing for the public, especially in the
Genetic Genealogy area, should lead the way. In their absence, maybe
governments would like to lend a hand in the form of regulations to help the
consumer.
10) Can drugs, medications or blood
transfusions affect the test results?
Y polymorphism and mtDNA tests are not affected by drugs, medications
or blood transfusions. Even patients who have had bone marrow transplants can
still be tested because cheek cells, not blood, are being analyzed.
The genetic privacy issue actually consists of at least 3 sub issues:
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
U.S. Dept. of Health and
Human Services regulations -- Applicability, 45 CFR 46.101;
Definitions at 45 CFR 46.102; Research conducted or supported by any federal
department or agency, at 45 CFR 46.103
HealthPolicy.com
-- FDA Information Sheets, Guidance for Institutional Review Boards and
Clinical Investigators, 1998 Update
HealthPolicy.com
-- New proposed privacy regulations
Proposed U.S. federal
statutes
Alliance of Genetic Support
Groups/Consumer Policy Network