Doctors, social workers, health personnel and medical ethics professionals gathered Friday at Loyola’s Stritch Medical School in neighboring Maywood for a
conference that explored the legal, ethical and moral issues surrounding genetic testing.
Katherine Wasson, a faculty member at Loyola’s Neiswanger Institute for Bioethics and Health Policy spoke about ethical and medical dilemmas presented by direct consumer access to genetic information.
“These tests are often marketed as providing information about people’s health – the companies are careful not to call it ‘medical’ information – and risks,” she said. “The hope seems to be that individuals will use that information to improve their health or take charge of their health on the basis of this type of genetic information – use it for prevention.”
The conference’s keynote speaker was independent filmmaker Joanna Rudnick, whose
film “In the Family” showed her emotional journey when she discovered that she carried a genetic gene mutation, common to people of Ashkenazi Jewish descent, that gave her an 80 percent chance of developing breast cancer and a 40 percent chance of ovarian cancer. In the film, Rudnick struggles with whether or not to have her breasts and ovaries surgically removed.
The “personal genome” was also discussed. Scientists decoded the human genome in 2003. Since then, genetic research has advanced so quickly that medical ethicists and lawyers are struggling to catch up.
In that time, direct-to-consumer (DTC) genetic testing companies that can decode DNA samples for diagnostic and predictive traits hidden in a patient’s DNA have sprung up. The tests, which cost between $250 and $1,000, search for specific genetic mutations for breast cancer or sickle cell anemia as well as the genetic likelihood of developing prostate cancer, diabetes or heart disease.
Some companies even sell predictive tests for athletic ability, alcoholism and likelihood of smoking. A company called My Gene Profile even tests for the “faithfulness/loyalty gene.”
Filmmaker Rudnick paid Myriad Genetics $3,000 for testing.
Until recently, the tests were unregulated by the FDA. The FDA took notice last spring, when Walgreens announced that they would be selling Pathways’ Insight DNA. For $29, patients could fill a vial with saliva and send it out for several genetic tests, paying up to $249 to search for the genetic risk of 23 different conditions including: heart attacks, high blood pressure, lung cancer and diabetes.
Scientists called the tests, “reckless” because, without a doctor’s explanation, they can be easily misinterpreted. What’s more, the science of genetics is still in its infancy. Walgreen’s no longer sells the tests.
“I’ve been interested in how people make moral decisions – how they go through the process – and those are often made in the medical and healthcare arena,” Wasson said.
Doctors may also end up ordering new duplicate tests, which consume medical resources, she said. Also, over-the-counter tests are not covered by HIPAA laws of patient confidentiality and can be subpoenaed in court.
Whether to test children is also a big issue, Wasson said. “You should only test a child for a disease you can do something about, for justifiable reasons, such
as sickle-cell anemia or cystic fibrosis – neither of which have a cure – but there are [medical] interventions that can be done.”
She said that guidelines recommend waiting until a child is 18 and can make his/her own decisions before genetic testing for “adult onset” conditions, “because once you have that knowledge you can’t un-have it.”
The balance has to be made with personal autonomy, said Wasson, at the conference. “There are benefits of knowing my risk or carrier-status. I might pass up those french fries a little more often … do things I should be doing anyway.”
Wasson said that knowing – or not knowing – your medical risks is a personal decision based on family medical history. The questions a consumer should ask
are: “Are the tests accurate; and, what do you do with the information?”