Mr. Speaker, it is a very important issue that our committee dealt with, but is not really reflected in the bill before us today.
We heard from many advocates for persons with disabilities at the health committee who raised concerns that genetic testing for the purpose of eliminating disabilities was a form of eugenic cleansing that would effectively lead to the biomedical elimination of diversity. Of course there are further concerns that these questions are being decided, and this goes back to the earlier question, by private corporations beyond public control.
Bill C-56 only makes passing reference to diversity in its principles. There is no mention at all in the bill of disability. There is no mention at all of a clearly defined prohibition around eugenics cleansing. There is no plan laid out in terms of dealing with the broad issue of genetic testing. Without regulation we have serious problems on our hands.
We have already seen prenatal testing taking place without full knowledge of what is or is not treatable. We have routine screening of newborns without parental consent, no prohibition of home genetics tests, demands by employers for genetic testing and life insurance companies demanding genetic test results as a result of customer screening. Even more interesting is the fact that since 1993, 30 gene therapy experiments have been approved without any policy framework or national genetic strategy. Without regulation there are serious safety concerns for persons engaged as subjects in genetic experimentation.
Let me raise one more issue which has to do with a case that we heard about recently in the news. Just two weeks ago an American company paid $2.2 million to settle charges brought by the United States equal employment opportunity commission for illegally testing its employees DNA for a genetic predisposition to a debilitating physical condition. In Canada we have not taken care to provide such protection. Bill C-56 offers no direction in this regard.
We know this is not an easy issue with which to deal. We know it requires consultation with provincial and territorial governments. However, when we are dealing with long awaited legislation with such an explosion of developments in this field, this matter should be addressed by parliament. It should be referenced in the bill before us today and should be part of a plan of action for the future.
We must ensure that persons with disabilities and their organizations are fully part of the discussions in this area. We must ensure that the diversity of our population, and that means people living with disabilities is respected and reflected in any legislation dealing with genetics and dealing with assisted human reproduction.