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Genetic Testing Bill Raises Questions about Medical Freedom

Bill, if passed, to mandate genetic testing for specific diseases on every newborn. But is it the State's right to decide?
By Netanel Katz and Tova Dvorin
First Publish: 5/26/2014, 5:32 PM / Last Update: 5/26/2014, 6:54 PM

Genetic testing (illustration)
Genetic testing (illustration)
Thinkstock

The Science Committee of the Knesset held a hearing Monday on the Genetic Information Bill, submitted by MK Meir Sheetrit (HaTnua). The bill, which has already been drafted, deals with genetic testing for newborns after birth. 

Under the proposal, the CEO of the Ministry of Health will determine a list of genetic tests to be performed immediately post-birth. Parents not interested in the tests would need to sign a waiver before the birth requesting that the tests not be performed. 

The tests are designed in part to detect and diagnose degenerative or other difficult diseases. The bill argues that early detection, in several cases, can either treat or cure the diseases, and give children significantly healthier lives. 

The bill has received tremendous support from the Puah Institute, Israel's major fertility organization, and the Hotem Forum, which deals with science and halakha (Jewish law). Both welcomed the proposal for contributing to neonatal health.

The Hotem Forum, however, has expressed reservations about the fact that the testing could become mandatory. 

"Sometimes the burden of a person knowing that a disease could affect the rest of his [child's] life is too much to bear," the Forum stated. "It is a serious thing to conduct the tests without the parents' express consent and the proposal must include checks and balances." 

"The bill leaves the authority to determine the details of the diseases to be included in the test , at the sole discretion of the Director General for the Ministry of Health," the Forum added, inserting another note of caution. While the Forum acknowledged that the bill will mandate that the Ministry consult with experts in the field for the decision, the Forum also recommended that an advisory committee be formed with doctors, rabbis, geneticists, and a broad spectrum of professionals to make the call. 

The Forum additionally recommended, "in light of the sensitivity of the issue," that sanctions be imposed on doctors who perform genetic tests on newborns that are not included in the mandatory list, if they are done without the parents' express consent. Doctors will also need to provide a comprehensive explanation on why the tests are being performed, including the consequences of missing early detection for diseases in question. 

Another and more severe problem is the issue of genetic carriers, according to the Forum. Testing may reveal that newborns are carriers of a certain disease but do not actually have the disease - a fact which, if revealed, could harm the potential for the child to find a spouse decades down the line. As such, the Forum demands that carrier status be forbidden to be revealed to the patient or the parents until the child turns eighteen - and only then with express written consent.