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Thursday, 14 November 2002
Page: 6360

Senator BARNETT (12:29 PM) —I notice the time factor, Mr Temporary Chairman, so thank you for the opportunity in the time available to speak to these amendments, which relate to the issue of consent—a very important part of this Research Involving Embryos Bill—which is set out in clause 8 of the bill. At the moment I believe the clause is deficient, thus the reason for the amendments. I have prepared an explanatory note that I have forwarded to other honourable senators in the last few days, but I would like to go through that and get it on the record so that people are aware and, over time, can consider the arguments. Amendment (R3) specifies some elements of the nature of the proper consent—

The TEMPORARY CHAIRMAN (Senator Cook)—Senator Barnett, you need to seek leave to move your amendments together.

Senator BARNETT —Indeed, that is a very fair comment, and I seek leave to move the amendments together.

Leave granted.

Senator BARNETT —I move amendments (R2) and (R3) on sheet 2694 revised:

(R2) Clause 8, page 6 (line 26) to page 7 (line 7), omit the definition of proper consent, substitute:

proper consent has the meaning given by section 8A.

(R3) Page 7 (after line 20), after clause 8, insert:

8A Meaning of proper consent

(1) In this Part:

proper consent, in relation to the use of an excess ART embryo, means:

(a) consent obtained in accordance with the Ethical Guidelines on Assisted Reproductive Technology (1996) issued by the NHMRC; or

(b) if the Chairperson of the NHMRC Licensing Committee specifies, by notice in the Gazette, other guidelines issued by the NHMRC—consent obtained in accordance with those other guidelines.

(2) It is a condition of proper consent that the donor:

(a) receives independent counselling; and

(b) receives written notification of, understands and consents in writing to the specific application to which the ART embryo will be put; and

(c) has a cooling-off period of 7 days.

(3) At all times a donor is to have access to the information about the use to which that donor's embryos were put.

Senator Harradine —I ask for clarification: are they amendments (1) and (R2)?

The TEMPORARY CHAIRMAN —It is (R2) and (R3).

Senator Harradine —What happened to amendment (1)? Is it on one of the sheets that I have in my hand? Is that what we are looking at?

The TEMPORARY CHAIRMAN —I am just obtaining an answer for you, Senator Harradine.

Senator BARNETT —Perhaps I can help with that one. That is actually set out on page 5 of the running sheet, in relation to clause 42 and clause 2. They go together, so we need to debate my amendments to clause 42 and then, subject to what happens to it, we move to clause 2. It is all related to clause 42; it is a consequential amendment. It relates to an anomaly in the bill.

The TEMPORARY CHAIRMAN —I think the answer to your question, Senator Harradine, is that it is there but we have not got to it yet.

Senator BARNETT —The amendments specify some elements of the nature of proper consent that this bill will require to be obtained from all responsible persons—that is, parents, gamete donors and their spouses—in relation to excess ART embryos before such embryos may be used for research under a licence from the licensing committee. The bill refers to the present ethical guidelines on ART 1996, and that is an important thing to take into account. It is the ART 1996 guidelines that the bill refers to specifically, and I will talk about that shortly.

The consent provisions in these guidelines primarily deal with consent of participants to ART treatment. They do not adequately address the very different consent to the use of excess embryos for research purposes that will ultimately and inevitably involve their destruction. The guidelines allow for counselling in relation to ART treatment to be carried out either within the clinic where the treatment will be received or independently. The amendments specify that counselling must be independent. Couples undergoing ART treatment at a clinic often form very complex relationships with clinic staff as they go through the emotional roller-coaster ride of successive attempts at IVF treatment.

It seems a better safeguard to ensure a fully free and informed consent to require counselling in relation to the use of excess embryos to be independent of both the clinic and the researchers seeking to obtain the embryos. Similarly, legislation relating to organ donation requires that discussion regarding such donation be conducted by a person independent of both the clinical team treating the patient and the transplant team. So we are looking at a process that is not dissimilar to the organ donation process in terms of consent.

Importantly, and I think this is incredibly fundamental, the amendments require a person to be notified in writing and that they should understand and then consent in writing to the research. Specifically, part of the amendment reads:

receives written notification of, understands and consents in writing to the specific application to which the ART embryo will be put;

This is important and is entirely consistent with COAG. I would like to refer to the COAG 5 April communique where it talks about consent. It says:

... including requirements for the consent of donors and that the embryos were in existence at 5 April 2002. Donors will be able to specify restrictions, if they wish, on the research uses of such embryos.

It is in the communique; the amendments are consistent with the communique. What is not in the bill is what has been said in the communique and, not only that, it was said widely and publicly time and again that the donors would be able to specify the type of research their embryos would be used for. I know what the response from the government advisers will be: `Oh, well, we can set that out in the guidelines.' That is not good enough. We are setting the guidelines here in this parliament; we are creating the legislative framework today that will apply for months and years well into the future, and saying that it will be set up under the guidelines is not good enough.

Let us talk a little bit about the guidelines. Senator Collins has previously discussed the guidelines—the ethical guidelines for ART 1996—at some length in this place. They have been referred to in our committee report at some length. They are draft guidelines. They are currently under review. As a committee, we were not able to comprehensively consider or review the guidelines because the response from the advisers was, `They're currently under review, so they're not that relevant to the committee today.' I find that staggering: we are creating a framework which will apply for years into the future and we have draft guidelines which are currently under review. So we do not even know what the guidelines are. I find that hard to comprehend, and that is why I will be supporting the foreshadowed amendment from Senator Collins which states that this whole regime cannot start until the guidelines are agreed to and the regulations are in place, because what we are doing is setting up a regime to start without knowing what the regime will look like in any event.

The amendments are entirely consistent with the COAG agreement, and that is a key point that I want to make about that part of the amendments. Amendment (R3) contains three subclauses. The second subclause includes reference to a cooling-off period of seven days. As the excess embryos that may be used in research will be in frozen storage, and research projects require substantial planning time, there seems to be no valid reason not to allow people sufficient time for reflection before they consent to the irreversible destruction of and research on their human embryos for which they are the responsible persons. Cooling-off periods are standard in contractual legal agreements like this for all sorts of reasons and for things less weighty than agreeing to destructive research on human embryos.

Finally, amendment (R3) provides that each responsible person be given access to information about what actually happens to their embryo. This is similar to the needs of organ donor families who are given information about the outcome of the donation. Not every responsible person will want to follow up on this—that is fine; that is within their rights—but those who desire information about these things should have the legal right to obtain it. I notice that that sentiment is consistent with the principle set out in a recent motion by Senators Andrew Murray and Aden Ridgeway regarding access to certain information about their past heritage.

They are the points that I would like to make. In light of the time available, it may be of merit for this chamber—because there are a lot of other things I could add—to receive a short response from government advisers so that we get a feel for where we are at, having regard to the time situation. If all the amendments are entirely acceptable, we can move on. If they are not, we can look at the reasons why and consider those reasons more carefully in this three-week period that we have to consider these amendments.

I commend the amendments to the committee. I can anticipate the response: `The guidelines are already there.' But they are for ART technology, which is totally different. They could say that the guidelines could be set up in the future but, if we accept that proposal, if these amendments do not go through, what we are saying is, `Here is a blank cheque; here is a blank regulatory regime.' At this stage a one-line signed consent would be adequate. That is totally unsatisfactory, and we need a better regime. We are creating the legislative and regulatory environment today in this chamber, and it needs to be tight. I hope to receive a response, at least at an interim level, from the government.