Mr. Speaker, it is my pleasure to speak to Bill C-13 at report stage. This is a very important bill.
I want to point out to members that the bill and the amendments can strongly affect Canadians with disabilities by supporting the drive that biotechnology firms are creating in the medical marketplace toward producing the perfect baby. I will return to this issue at the end of my address. I would first like to talk about the progress of the work on the bill that the NDP has tried to accomplish.
This is my first opportunity to speak to this legislation. I want to add my voice to all of the voices of Canadian women who know that the need for legislation is urgent. This urgency is underlined by recent sensational news stories about experimentation with human cloning.
The urgency for me has also been brought home by a recent conversation which I had with a health expert who informed me that there are hundreds of new assisted reproductive technologies and drugs that are aimed at the Canadian market and will be arriving in the next year. We really cannot afford to leave this very critical area of public health to the mercy of the biotech market.
During the committee's examination of Bill C-13, New Democrats attempted to introduce amendments to strengthen the bill in areas that we believed needed improving. Some of our concerns were addressed, but several important proposals were voted down by the Liberal majority on the committee.
My caucus colleague proposed 13 amendments during committee stage and succeeded in gaining several improvements to the bill. We wanted the protection of the health and well-being of women added to the principles. We wanted the donors to be provided with independent information before participating and that the public be informed of the risk factors relevant to infertility. As well, we wanted the board of the assisted reproduction agency of Canada to consist of a minimum of 50% women. We wanted the addition of a comprehensive conflict of interest clause governing the board as well.
We were unsuccessful in adding the precautionary principle to make safety an overriding concern. The committee also voted down our amendment to tighten up the commercial sale of reproductive materials and to make the agency more accountable by stipulating what it would do rather than what it may do. We tried and failed to facilitate donor identification in recognition of the needs of children born through reproductive technology.
If the government had seen fit to simply follow the wisdom of the committee which had spent time, expertise and energy to review the bill, we would be seeing improvements to this legislation. Sadly, we are seeing steps backward instead.
We have seen the failure to include the basic safety provision of the precautionary principle to safeguard women's health, together with the reversal of our gender parity and conflict provisions for the agency's board. Measures needed to keep biopharmaceutical corporations at bay has left the NDP no choice but to vote against the bill at third reading. This is despite our desire to have a long overdue regulatory framework in place as soon as possible.
I would like to re-examine the principles involved here.
Our first concerns were for health protection. Women involved in reproductive technologies ought to be assured that the drugs and treatments they take are safe beyond a reasonable doubt. As well, they must have access to independent information and counselling at critical times when they may be vulnerable to promoters of technologies that may put their health at risk. We succeeded, although not in as decisive wording as we had hoped, with the formal acknowledgement that the health and well-being of women must be protected in the application of these technologies.
We were not successful however in securing that protection through the instrumental inclusion of the precautionary principle in the bill. We sought to include the precautionary principle in the principles and application and interpretation sections and again in clause 13 through which it would have been applied to all controlled activities covered by the act.
To further the objective of informed decision making by those participating in reproductive technologies, we proposed, and it was accepted, to require all those licensed under the act to provide donors in advance with independent information provided by the assisted human reproduction agency.
Commercialization is another of our big concerns with Bill C-13. Much of reproductive technology remains the private reserve of giant life sciences and drug corporations with patent protection taking precedence over the public good and with private for profit interests dominating the field.
We attempted to tighten up the bill's prohibition against commercial gain by extending the ban on purchasing ova and sperm to include offering them for sale. This would correspond to the treatment given embryos under the bill. The amendment, as well, was defeated by the Liberals.
I would like to return for a minute to concerns that persons with disabilities have around this bill and the whole issue of reproductive technology, biotechnology and the new era we have entered of designer babies.
I would like to raise some important issues which have been posed to me with regard to the whole issue of prenatal genetics testing.
I have spoken with women who have received prenatal testing. This testing has shown, for example, high possibilities of giving birth to a child with Down's syndrome, or a child with spina bifida or with a cleft palette. After this testing has been done, they find themselves presented with a barrage of very negative counselling about the need for termination.
This is a very disturbing situation because what we are seeing is thousands and thousands of times each year in doctors offices women being faced with decisions around terminations of pregnancies without being given the kind of honest and neutral counselling about the values of having a child with a disabilities and about persons with disabilities who are living and contributing in the world.
The question that is raised as soon as we realize we have the ability to “screen out” Down's syndrome, cleft palette, spina bifida and bipolar disorder is this. What does that mean to the people who now live on the earth, who live among us and who are in our families who have disabilities? What does that mean to the value that they see given to their own lives?
I would like to take this opportunity to read a declaration which has been put forward by the Disabled Persons International on this subject, which I think is very germane to the topic. It states:
The right to live and to be different.
Up until now most of us have been excluded from debates on bioethical issues. These debates have had prejudiced and negative views of our quality of life. They have denied our right to equality and have therefore denied our human rights...
We are full human beings. We believe that a society without disabled people would be a lesser society. Our unique individual and collective experiences are an important contribution to a rich, human society.
We demand an end to the biomedical elimination of diversity, gene selection based on market forces and the setting of norms and standards by non-disabled people.
Biotechnological change must not be an excuse for control or manipulation of the human condition or biodiversity.
In closing, I and my party believe in that declaration. My colleague from Winnipeg Centre has put forward a very strong private member's motion on the importance of a national strategy around genetics and genetic counselling which will bear in mind and keep front and centre the value of persons with disabilities and will respect the dignity of their lives.