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ACMG Says Consumer Genetics Needs Informed, Counseled Customers

NEW YORK (GenomeWeb News) – The American College of Medical Genetics on Friday issued an advisory statement to the public and the health care community about direct-to-consumer genetic tests, saying in a policy paper that consumers need to be counseled on the utility and meaning of these new technologies. 
 
“Just because a genetic test exists, does not mean it is right for everyone or even right for anyone,” ACMG Executive Director Michael Watson said in a statement.
 
The group advises greater involvement from counselors and doctors with consumers when it comes to making choices about these tests, and for increased oversight and regulation for the nascent consumer genetics industry.
 
The group proposed five recommendations for health care providers, businesses, regulators, and consumers to consider.
 
Because genetic testing is “highly technical and complex,” ACMG said, “a knowledgeable professional should be involved in the process of ordering and interpreting a genetic test.” This can help reduce certain risks involved in genetic testing, which include issues of consent, “inappropriate testing, misinterpretation of results, testing that is inaccurate or not clinically valid, lack of follow-up care, misinformation, and other adverse consequences.”
 
“The consumer should be fully informed regarding what the test can and cannot say about his or her health,” the group contended. Because interpretation of results is “highly nuanced … such information needs to be communicated to the consumer in the appropriate context and in an understandable fashion,” ACMG advised.
 
The group also asserted that the “scientific evidence on which a test is based should be clearly stated.”
 
In addition, ACMG said that labs involved in offering these genetic testing services “must be accredited by CLIA, the State and/or other applicable accrediting agencies,” and this accreditation should be shared with the consumer along with test results.
 
Finally, privacy concerns also must be addressed, the group said. Consumers should be informed about what will happen to their results, who will have access to them, and how they may find out information about privacy breaches that may occur, ACMG said. Other privacy matters that should be discussed with consumers include employment and insurance discrimination issues and the potential impact the results of tests may have on family members.
 
“The potential benefits to mankind are tremendous but there are a great many questions still to be answered and more research to be done to better understand how genetics affects many conditions,” ACMG President Joe Leigh Simpson said in a statement.
 

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