Cllr Hrayr Cruthin, holding a large collection of papers in his hand, stood to speak
The proper management of biotechnology and genetic modification is, in Angleter’s view, an issue with potentially massive cross-border implications, and therefore we consider it entirely reasonable that the Council should seek to legislate on this issue. For that matter, we would welcome an additional Bill at a later stage managing the use of these technologies in non-human life.
We are all sovereign nations, but our ecosystems do not stop at our borders. Angleter is wise to these risks, foreseeable and unforeseeable, and therefore we have very strict limits on gene therapy and on genetic modification in non-human life, in addition to a complete moratorium on IVF that was instituted in 1998. Naturally, we will be seeking an amendment to this Bill to clarify that it does not overturn that moratorium.
Angleter supports the general principles of this Bill, although we have a number of concerns about the text as it stands and would like to support or propose some amendments.
Firstly, we concur with Cllr Schröder’s concerns about subclause II.3. The question of whether a sperm or, for that matter, egg donor’s identity should be revealed to their children is fraught with ethical issues. While I appreciate reassurances that donors will not be left on the hook for child support or suchlike, it’s entirely plausible that a child, upon turning 18, may expect some degree of contact with their biological parents.
Most sperm and egg donors, to my understanding, do not donate with the expectation of fulfilling the duties of a parent, even to an adult child; and I also understand that many sperm donors in particular turn out to be the biological parents of a lot of children. They have, under the provisions of this Bill, no control over who the other biological parent will be, who will parent their biological children, and what the circumstances of those children’s upbringing will be – indeed, not only that, but they have no knowledge.
I know that there are powerful moral arguments on the other side, but I believe this is a debatable enough issue that each member state should be left to decide it for themselves. I would, therefore, support the wholesale removal of subclause II.3, and if Cllr Schröder will not bring forward an amendment to such an effect, then I will.
With respect to subclause II.7, I would suggest that member states should be able to lay down further provisions on sperm banks and suchlike however they want, rather than just by regulations.
In the following subclause, I believe it is important to stress that sex-selective treatment should only be employed if either parent – not just the mother – has been demonstrated in a test to be a carrier of a sex-linked hereditary disease. I think it would be wrong for unscrupulous doctors to get off on the technicality that the mother or father turned out to be a carrier after the fact. Furthermore, the term ‘serious’ warrants more specific definition.
I’m unconvinced as to the value of banning ovary transplants and the like at the European level, and the same for the discouragement of egg donation, and I’ll table an amendment to give the Council an opportunity to decide what course of action to take.
Angleter would welcome the bans on human cloning and the intentional creation of genetically identical individuals. However, we would seek clarification in subclause II.20 to stress that it only applies to IVF cases and not to naturally-conceived unborn children.
I am concerned about subclause II.23 and would suggest that it be rewritten. At present it is unclear whether the member state would need the approval of the EBAB before giving authorisation, or whether it would simply need to notify the EBAB. I would suggest that the proper order of things should be the member state granting authorisation and then notifying the EBAB, which could then have the power to review the decision.
Finally, I concur with Cllr Greene’s point about using the age of majority rather than specific ages.
In closing, I believe this will be an important addition to the corpus of EU law, provided that it is amended appropriately in the coming days. Accordingly, I’d like to table the following amendments, which I believe I’ve explained over the course of my speech.
AMENDMENT I: SUBCLAUSE II.3
3.1 Any person who is born as a result of medically assisted reproduction using donated sperm has a right to information on the sperm donor’s identity at the age of 18. A donor register shall assist the child in this matter.
3.2 Member States shall establish a register of the identity of sperm donors so that children can exercise their rights pursuant to this section.
AMENDMENT II: SUBCLAUSE II.7
Member States may by regulations lay down further provisions on the organisation of sperm banks, the use of donated sperm and the registration and reporting of information on sperm donors.
AMENDMENT III: SUBCLAUSE II.8
Treatment of sperm before fertilisation for the purpose of selecting the sex of the child is only permitted if the pregnant-to-be individual is has tested positive as a carrier of a serious sex-linked hereditary disease that is either life-threatening, severely life-limiting, or associated with severe physical or mental disability.
AMENDMENT IV: SUBCLAUSE II.9
Genetic testing of embryos before implantation into the womb, including tests designed to choose the sex of the child (preimplantation genetic diagnosis) may only be carried out in special cases of serious sex-linked hereditary diseases that are either life-threatening, severely life-limiting, or associated with severe physical or mental disability; and for which no treatment is available. If special considerations so indicate, the European Biotechnology Advisory Board mentioned in section III may emit favourable rulings for genetic testing of embryos. Such permission may be granted for serious hereditary diseases that are either life-threatening, severely life-limiting, or associated with severe physical or mental disability and for which no treatment is available. The embryos selected must not be genetically modified. Before preimplantation genetic diagnosis is carried out, the pregnant individual shall be given genetic counselling and information.
AMENDMENT V: SUBCLAUSE II.13
The donation of oocytes or parts of oocytes by one individual to another is to be discouraged. The transplantation of gamete-producing organs and tissue from one individual to another for the purpose of treating infertility is prohibited.
AMENDMENT VI: SUBCLAUSE II.20
Information on the sex of the a fetus conceived via in vitro fertilisation before the 12th week of pregnancy resulting from prenatal diagnosis or other examination of the fetus shall only be given if the pregnant individual is a carrier of a serious sex-linked disease that is either life-threatening, severely life-limiting, or associated with severe physical or mental disability.
AMENDMENT VII: SUBCLAUSE II.23
Before presymptomatic genetic testing, listed in section I.e), is to be developed, Member States shall give separate authorisations for each disease or predisposition to a disease testing that is to be subject to research and development. Before Member States decide whether authorisation is to be given, the application shall be submitted to the European Biotechnology Advisory Board. Member States must notify the European Biotechnology Advisory Board of each authorisation within 24 hours of it being given; and the European Biotechnology Advisory Board shall have 14 days from the point of notification to decide whether to overrule the authorisation subject to the submission of sufficient additional evidence.
AMENDMENT VIII: SUBCLAUSE II.30
Gene therapy may only be used to treat serious diseases that are either life-threatening, severely life-limiting, or associated with severe physical or mental disability, or to prevent the occurrence of such diseases. Gene therapy on fetuses and embryos and gene therapy that may involve genetic modification of gametes is prohibited.
AMENDMENT IX: NEW SUBCLAUSE BEFORE II.1
(). LEGALITY OF MEDICALLY ASSISTED REPRODUCTION
Member States reserve the right to impose additional regulations and restrictions on the use of medically assisted reproduction within their territory, including with respect to the overall legality of medically assisted reproduction.