Her name was Asley Michelle. She was in her early thities,with good patrician features. She had wide beautiful eyes, a slim figure, and there was a subtle attractiveness in her. She was jovial and had a killer smile. She was a lady who charmed and endeared everybody who knew her. However, suddenly people noticed a perceptible change in her behavior which surprised many who knew her from the close quarters.
As the time passed, she confined herself to her cubicle in the office where she was working. The signs of worry and fear was quite palpable on her face. People asked her to know the reason, but she kept mum.
It was her childhood friend Jim Cerley who first get to know about the issue that had almost rattled her.
Her problem actually started 3-months-ago, when she first heard Angelina Jolie opting for a DIY genetic test; she,too, decided to follow her steps and ordered for the similar DIY genetic testkit (to collect your blood sample to analyse your genetic profile)
However, the results did not please her and it ultimately pushed her into depression. Acccording to the report she received, she belonged to Ashkenazi Jews, which were more predisposed to breast or ovarian cancer. The probability of BRCA mutation—which is considered a good indicator of breast cancer —is found 1 in 40 for Ashkenazi Jews against 1 in 500 of the general population. So her fear was not unwarranted either considering that her mother died a couple of years ago of breast cancer.
Asley is among the fast rising breed of DIY genetic tests who are turning to it after it got endorsement from Jolie. There are many people who are turning to such DIY genetic tests to know deeply about their genetic disposition.
Angelina Jolie effect is a reality
A touching article appeared on on May 14,2013 in NewYork Times written by Angelina Jolie, the Hollywood diva. She attempted beautifully to explain her decision. She wrote: “MY mother fought cancer for almost a decade and died at 56,” the 37-year-old actress further says, “My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.”
Aware of the harsh reality she decided to be proactive and decided to have a preventive double mastectomy.” However, once the article appeared, it led to an increase in the number of women opting for the similar test. And most importantly, the rate of the highly publicized surgeries, testing and counseling almost doubled in the next six months.
Dr. Jacques Raphael, a clinical fellow at Sunnybrook Odette Cancer Centre in Toronto, Canada confirmed that physicians probably referred more patients and patients, too, requested more about the test and surgery.
Now people are turning to such tests to know other things such as, their genetic predisposition towards other diseases and ancestry.
The Angelina Jolie effect did not remain confined to U.S.A, it also led to an increase in the number of websites offering such services in UK where the sales figure for such $199-300 kits doubled in a short period.
Celebrity endorsements, also, sparked the people’s interests in such tests which boomed the whole industry of DIY genetic tests. For example, the actor Tom Conti proudly revealed that he is related to Napoleon. Comedian Eddie Izzard claimed to trace his family tree back 10,000 generations through DNA analysis.
Why experts are worried?
The sudden popularity of such websites offering tests has surprised and more than that worried scientists and experts. They fear that information about the serious indicators, such as Alzheimer, Parkinson, and certain types of Cancer may unduly distress them.
Though, some websites have given potential warning and limitations of such tests, but critics don’t think it’s sufficient – when they have option to know it in a couple of clicks.
However, many people, like Asley, may not be psychologically prepared to deal with the results and they may be unduly worried.
There are more than 3 billion letters in our genetic code and even don’t fully understand the role of every gene and repercussions of every mutation. So how can we expect consumers to understand such issues.
Loopholes in the law
Alarmed by the potential implications of such tests Food and Drug Administrations (FDA) stepped in it ordered 23andMe to sell such kits without their permission. This seriously clipped the wings of the company in the U.S.A and also impacted their business.
However, the company swiftly changed its business strategy and started targeting Canada where there is no clarity in the legal provisions regarding such DIY genetic tests. Health Canada is of the view that it’s the duty of provinces to curb such activities, but provinces thought otherwise as the testing that is done outside their borders. Clearly, the lack of coordination has emboldened the company to ramp up their marketing effort for Canada.
The larger debate and dilemma
The strict action of FDA triggered outrage among those who believed that it deprives them to know about their own body. The argument also seems to be true to certain extent.
The issue has also raised an ethical dilemma for doctors. Patients are opting for this test without their consent and they are also sharing the results with their physicians, but request them not to mention them in the medical record, “I have lethal genetic mutations going in my body, but I request you to not this fact in my medical record” – putting the practitioners in a difficult spot.
Patients fear that insurance companies may discriminate based on their genetic predisposition, doctors need to put all medical records related to patients. There are also worries related to the misuse of data which may be sold to insurance companies who can use this gain unfair advantage. And these threats are not warranted either.