Thinking about ordering a genetic test that you’ve seen on tv to explore you or your child’s possible medical risks? One geneticist referred to this as “genetic astrology”. The genetic screening market is exploding and by 2022, it is expected to reach $310 million dollars. But the American Academy of Genetics and Genomics and the American Academy of Pediatricians ‘strongly discourages’ the use of these tests for children.
Why is that?
When a genetic company collects genetic material (that cheek swab) they own the sample and can even sell it…I didn’t know that…did you? Dr Ross (a professor and medical ethics expert at Univ of Chicago) said, “So, in a sense you’ve taken away this child’s right to privacy.” Not all adults want to know what their medical risks are…children will be stripped of this decision. Others worry about discrimination based on results. The Genetic Information Nondisclosure Act protects against discrimination in employment and health insurance but carries no protection for life, disability or long-term care insurance. So, if you have a family history of Alzheimers and you test positive, you may not be able to get long-term care insurance to meet your own needs! The tests are not always accurate and may test for only common variants of illnesses. The field is changing so information given to you may become outdated. Counseling should be made available in case the test reveals some unexpected bad news. Everyone knows that genetic tests are the future…but it sounds like we’re not quite ready yet.
Susan Badaracco, pediatrician and author of “The Oath” series.
