Printed from: https://www.cmf.org.uk/advocacy/submissions/?id=39
Published: 25th November 2005
One of CMF's aims is 'to promote Christian values, especially in bioethics and healthcare, among doctors and medical students, in the church and in society'. As Christian doctors we support the use of science and technology to prevent, treat and relieve the suffering of infertility but believe that this should be guided by sound ethical principles based on a profound respect for all human life from the time of conception and respect for marriage as the ideal context for procreation and the protection and raising of children.
CMF regularly makes submissions on ethical and professional matters to Government committees and other official bodies. All our submissions are available on our website at www.cmf.org.uk/ethics/submissions/. Of particular relevance to the current consultation are all the other submissions we have made to various bodies, including the HFEA on the same issues that are being considered by the Department of Health:
We are baffled by the need for this consultation in light of the other consultations that have been carried out in the last year or so. The Department of Health's consultation appears to be covering all the same issues and questions. We hope the Department will access the original submissions to these other consultations so that they can draw on that evidence and draw their own conclusions. We also wonder what role the HFEA's newly released consultation Choices and Boundaries on the use of PGD for low penetrance disorders will have in light of the Department's consultation.
The Christian Medical Fellowship (CMF) is an interdenominational organisation with more than 4,500 British doctors as members. All are Christians who desire their professional and personal lives to be governed by the Christian faith as revealed in the Bible. Members practise in all branches of the profession, and through the International Christian Medical and Dental Association are linked with like-minded colleagues in over 100 other countries.
Our submission is written by drawing on the expertise of individuals within our membership who have experience of the issues and the time and willingness to be involved.
We agree that the development and use of human reproductive technologies (ART) should continue to be subject to legislation.
ART is a branch of medicine that should be subject to community oversight and reflect community values as it involves the creation of human life. Safeguards need to be in place for the sake of those accessing services, those who are born as a result and the community in general.
Parliament should take a clear lead in setting the boundaries within which the reproduction 'industry' can work. In recent years we have seen new methods licensed or endorsed by the HFEA without a clear indication of the legal status, and without proper public or parliamentary debate [1] and there are further new developments that may fall outside current legislation.[2] The safety and ethical issues these raise need to be openly discussed and carefully considered, in a manner that is transparent to the public and allows them full engagement with the discussion.
The regulatory body must not usurp the role of Parliament in altering statutory boundaries nor campaign on changing specific provisions.
The HFEA doesn't seem to have worked very well, perhaps because its responsibilities are too wide. It may help to identify the roles which are needed:
To streamline such a process it might be desirable to have all proposals screened by an ethics committee at local level first, so only appropriate submissions are made to the centralised group.
Some of these functions could be filled by having an HFEA-type committee working alongside parliament. The committee should be carefully selected to fully represent the cross section of views and expertise available, with an element of 'fixed membership' set in the legislation, for example, that the committee should contain persons with expertise in research ethics, ART clinical practice, relevant areas of research, ART regulation, law, two consumer representatives (one with experience in accessing ART and one from the disabled community) etc.
We agree that legislation needs to be more explicit.
We note with concern the comments from the Health Minister Caroline Flint, on release of this consultation, that, 'We never expected the Act would remain forever unchanged in the face of developments in science and medicine. We want to ensure that we can continue to reap the benefits of the latest developments within a system that continues to inspire public confidence.' Also the comments of John Paul Maytum, of the HFEA, that an updated Act would need more scope for amendment.[3]
These comments suggest that the Act should be as pliable as possible, so that new scientific developments can 'lead the way' in shaping guidance and practice in this country. This is a position we strongly oppose.
We recognise the problem that the legislative process can take time and thus delay practice. However, this is preferable to having an Act that allows all new possibilities to be exploited.
The legislation should specify legal procedures to guard against enthusiasts pushing forward the boundaries of 'what is possible'. This would ensure that boundaries are laid down that cannot be crossed without Parliament giving proper consideration to the issues involved, as well as allowing for more public involvement. Furthermore there should be guidelines that are endorsed by Parliament, but act as a more flexible element in the proceedings. The body responsible for them would be accountable to parliament – needing to justify any decision to make changes.
We note with concern that the forces of consumerism and high profile media cases are frequently the elements pushing for change to the current system. It is imperative that Parliament and the Regulatory body (be that the HFEA or the proposed 'RATE') are not led by these forces.
We agree.
The Government has specified that it doesn't want to revisit the status of the embryo debate. We disagree with this conclusion. Standard educational theory promotes reflective learning, which involves reflection and analysis of past experience leading to planning for the future. Thus this consultation should revisit where we are and where we have come from with regard to the status and use of human embryos. An unwillingness to even contemplate adequate reflection and analysis in this context will undermine any decisions made as a result of this consultation.
ART inherently revolves around creating, using, testing and destroying embryos. The legislation that governs it therefore has to be built on recognition and careful consideration of what the 'embryo' is, how it will be defined and how it should be treated. In our opinion the Warnock report [4] is now out of date; the gradualist approach is ethically unsound, thinking has moved on since 1984, and much more has been published on the embryo than was available at that time. We now know, for example through advances in developmental biology that individual cellular function varies between individuals when only a few cells are present rendering obsolete and inaccurate the idea that individuation does not occur until the neural streak is visible. Just because you cannot see it doesn't mean it is not there! All of this needs to be taken into account if the Government's revisiting the legislation is to be worthwhile.
Many members of the public hold a high view on the status of the human embryo, in the medical profession, faith communities and society generally; and yet this view has been consistently marginalized whilst those with extreme views on the disposability of embryos [5] have been welcomed onto the HFEA and its committees. This is profoundly undemocratic.
The term 'embryo' needs to be clearly defined, not in terms of personhood, but in terms of biology. This will avoid researchers side-stepping the legislation with novel methods of creating 'embryos' (eg. parthenogenesis etc).
We support the definition given in German legislation that defines an embryo as any totipotent cell that may divide and develop into an individual human being once the necessary further conditions are provided. Researchers would then have to provide evidence that an entity is not an embryo if they want to conduct unlicensed research upon it. As in a court of law where one is assumed innocent until proved guilty, a totipotent cell is presumed to be an embryo till proved otherwise. Research involving embryos would thus need very strong justification to be allowed to go ahead.
We disagree with the creation of human embryos for research, as it is unethical to create human life with the purpose of destroying it.
The existence of excess ART embryos is regrettable and they are used for research on the basis of the argument that they will be destroyed anyway. We would prefer to see embryo adoption promoted as an option for parents of 'spare' embryos. Couples coming for infertility treatment should be counselled about the problems of having supernumerary embryos and helped to decide in advance what they will do with embryos that are unused in their own treatment. Where possible the creation of supernumerary embryos should be avoided.
We agree.
Removing eggs in the process of fertilisation from the protection of legislation could leave a loophole in the law that would be exploited by some researchers.
We agree that the use of artificial gametes should not be permitted at the current time.
Any novel or experimental treatment needs to be approved by an ethics committee with appropriate expertise should the time come when preliminary studies have proven its safety, efficacy and a need has been established. In view of the number of excess ART embryos in storage, it is difficult to see how use of artificial gametes could ever be justified when embryo donation is possible.
Artificial gametes also raise a significant number of other safety and ethical concerns. Their use should not be permitted without extensive proof of their safety, necessity and considerable public consultation. We find it difficult to see how their use could ever be justified.
In general, treatment involving a couple's fresh gametes, where the gametes and/or embryos are not manipulated or tested in any way, isn't as problematic as other forms of treatment.
Certain issues need to be covered by legislation, such as the maximum number of embryos to be transferred, clinical techniques, safety procedures and counselling etc. We are concerned that the law should aim to protect these infertile couples from being exploited commercially.
Gamete supply through the internet should be banned on grounds of safety, quality control, and the problem of ensuring availability of accurate information about the donor. All ART services need to be subject to standardised and accountable accreditation procedures for the public good. Furthermore we are concerned that payment for gametes should not be promoted in any way.
We favour the move towards minimising the number of embryos transferred in order to protect against multiple pregnancies and selective termination. Multiple pregnancies have a higher mortality and morbidity. A large number of multiple births require intensive paediatric care, and there is growing evidence of learning difficulties in such offspring.
The publication of 'take home pregnancy league tables' on clinics, in a consumer driven market, may create conflict with these safety issues - clinics will want to maximise their success. While professional bodies should be able to decide within a given situation the number of embryos that should be transferred so as to increase the chances of a successful pregnancy, national legislation in the light of advice from professional bodies would be advisable in order to protect the safety of patients and resultant children. Regulation should also require that destruction or loss of embryos be minimised as much as possible.
In view of potential profits to be made by ART service providers and the vulnerability of infertile patients, the provision of services needs to be transparent. This would be achieved by private service providers collecting data on services provided.
As far as is possible the ability of practitioners and service providers to profit unfairly out of ART and thus to profit from other peoples infertility must be minimised as much as is practicable and possible – whilst understanding that the practitioners involved do need to make a living.
We realise that the need for some level of flexibility is important, though we are also concerned that the regulator should not have too much power. We have found the activities of the HFEA in this respect highly unsatisfactory.
We oppose the use of embryos in research. However, recognising that their utilisation is likely to be legal under any new legislation, we would like to see regulations in place that favour protection of the embryo over exploitation.
The Australian model states in the relevant legislation that excess ART embryos can only be destroyed for purposes that will advance knowledge or develop technical expertise. Licences for research must fulfil these criteria and the committee has to justify its decisions before parliament - so they cannot overstep the boundaries of the legislation. Only technicians who meet certain requirements of competence are allowed to use human embryos as part of training (eg. for PGD biopsy). The legislation states that human embryos cannot be used for any destructive research if the knowledge could be gained by any other means (eg. using animal models, dead embryos, adult stem cells etc).
With similar safeguards in place, we would also want to see a National Ethics Committee, responsible for authorisation of activities, in partnership with accountable Local Ethics Committees.
Taking account of the welfare of the child should remain an obligation on treatment providers.
Society has always had some regulatory role in procreation such as the prohibition on incest, which is based on the welfare of the child and the increased risk of genetic abnormality if close genetic relatives reproduce. It is in the interests of society to take an interest in the welfare of children, and the state intervenes to remove children from harmful domestic situations. While life may bring the child into difficult situations, there is a moral difference between this and actively choosing to bring the child into an unhelpful environment.
Therefore, while there is definitely a role for the individual clinician to decide whether certain prospective parents should be eligible for treatment, basic requirements for the child's welfare are appropriately listed within legislation. Social science research suggests that children do best when receiving nurture from a male and female parent. Children are harmed by marital breakdown. These findings suggest that ART services should be provided only to married couples.
Welfare of the child should also be protected by the legislation of basic safety standards in the ART industry. It should also be kept in mind in the granting of permission to use experimental techniques.
These requirements are not novel, but already active within the child adoption model. As a general rule we believe that the same principles applying to the approval of adoption of babies or children should apply to couples seeking to adopt embryos or use donor gametes. It is not discrimination; it is the state upholding its responsibility to take an interest in the welfare of its citizens.
In light of the recent report from the House of Commons Science and Technology Committee into Human Reproductive Technologies and the Law, which recommended the abandonment of the welfare of the child principle, we are unclear of the impact of this current consultation. We reject the arguments in the relevant paragraphs (91-107) of the Committee's report and would oppose their incorporation into new legislation. Further, we applaud the change in the law regarding donor anonymity, which recognises the importance of the future child's welfare over and above parental desires.
We are concerned about the way the welfare of the child is already watered down in practice, and would like to see more counselling of couples prior to the initiation of treatment.
The welfare of the child is an important issue, as is the welfare of the potential parents. While in a perfect world infertility experts will be excellent counsellors and communicators, in the real world this does not happen. This is why there is a health care team. Intrinsic to this should be the work of infertility counsellors, as proposed by the Kings Fund Centre, and General Practitioners. The former help potential parents explore a large variety of issues related to their infertility and future pregnancy and parenthood. In a consumer culture, this requires legislation to ensure both welfare of the potential child, and the parents are adequately catered for.
Obviously there is an element of clinical judgement involved, but as noted above, the basic requirements need to be legislated, as it is the responsibility of the state.
It is also imperative that the GPs of individuals and couples presenting at infertility clinics are informed of the treatment being proposed and relevant information is shared. GPs will know their patients best and therefore be able to contribute significantly to the welfare assessments of the future child and the prospective parents. It is important that people attending infertility clinics have 'joined up' and holistic care.
In a culture that emphasises the relevance of the bio-psycho-social dimensions of health, regression to a purely medical model is to be avoided. Clinicians need to take a holistic view of the welfare for all their patients.
Consideration of the Welfare of the Child should include:
Information about risk factors provided by the patient, plus follow-up to the GP and other agencies [as necessary] routinely. Based on our primary assumptions, there should be assessment of the couple seeking assisted reproduction. This needs to involve GP follow-up in order to gain an outside perspective on the couple; information provided solely by the couple will not be sufficient. Other agencies should be approached freely as deemed necessary.
Risk factors to consider should include medical, physical and psychological harm and social circumstances. Society accepts that a person's welfare goes far beyond medical and physical 'health'. As the World Health Organisation's definition of 'health' recognises, health also involves psychological, social and spiritual factors. These factors must be taken into account if a full assessment of the welfare of the child is to be made. Looking beyond mere medical factors provides a more wholistic approach to the assessment – for the parents, any existing children, and any future child.
In the absence of resources to adequately address the welfare of both parents and potential child, counselling by a properly trained counsellor as outlined by the Kings Fund Centre, should be mandatory.
Changing the legislation to “the need of the child for a father and a mother” is our preferred option. At the very least, the current wording should be retained.
We are concerned that the HFEA's Code of Practice translated the 'need for a father' into a need for persons or partners. We also note the Chair, Suzi Leather's, stated opinions that the need for a father clause should be dropped. This failure on the part of the HFEA to enact and support the legislation that was laid down through a democratic process, seems profoundly undemocratic on their part.
We agree. Written consent is a necessary legal safeguard for the patient, the donor and the clinician. Guidelines need to be in place to make sure consent is fully informed. It is important that where a couple are presenting for treatment, both partners give consent, and are therefore both fully informed about which procedures will be carried out etc. This process of informing and getting consent could be used to encourage both partners to be adequately counselled about the potential future options regarding any extraneous embryos/gametes.
Yes, see above.
Storage should be allowed until the situation is clarified, ie. until it is established whether the person will regain capacity or the person with power of attorney is identified, and makes a decision. Therefore storage would not be indefinite. A time limit should be set in the case of difficulty contacting the relevant parties.
Yes, the formation of the embryo must occur only with written consent from the gamete donor and, where relevant, the couple for whom the embryo is formed.
In cases of couples undergoing treatment or storing gametes for other reasons, for example post chemotherapy, a consent form could be used that makes provisions for the event of death, and allows the remaining partner to have access to the gametes.
Gametes taken from an individual lacking capacity should not be used without that person's consent.
We believe that human embryos are people not property and that the provision for parental consent for the treatment of embryos should follow the general principles of consent for treatment for an existing child. In other words the presumption is that the parents in exercising consent are acting in the best interests of their embryos. If this is not the case then parents should forfeit their right to consent.
We are deeply concerned about the large number of frozen embryos currently in storage and note with further concern that this number is increasing dramatically. We believe that as a general principle embryos should only be created if it is highly probable that they will be implanted either immediately or in a subsequent pregnancy. We are also concerned about the effects of the freezing process on subsequent embryo morbidity and mortality.
As a default position provision should be made to give the embryo a chance at life, and therefore withdrawal of consent by one party should not result in the embryo being removed from storage.
Embryo adoption should be offered as an option to those responsible for excess embryos. Counselling should be made available before embryo creation and these eventualities could be considered in advance. Counselling could therefore account for both partners' views and 'interest' in the embryos (eg. if one partner needs chemotherapy and therefore these embryos are their only chance at reproduction, while the other partner has no such restrictions on their future fertility).
Legislation should specify that only the number of embryos required for clinical treatment should be created.
The amount of time embryo storage will be needed may vary depending on the situation.
Gametes harvested from a teenager about to undergo chemotherapy will need to be stored longer that those for a married couple planning their family. Clinical judgement would be needed here. If maximum storage limits were to be introduced, it is important to make sure treatment periods are not pressured, with the option for extension of storage time where clinically appropriate. Additionally, it may be worth considering the costs that couples may incur in order to keep their embryos in storage, which for some patients may be prohibitive, or push them towards giving the embryos to research when they would prefer to retain them for longer, until they feel able to make a considered choice.
Another reason for maximum storage time is to allow ART clinics to have a limit on how long they have to keep gametes and embryos in storage when patients are lost to follow-up. In general follow up should be maintained, both for questions over stored gametes/embryos, but also so that the children born of ART can be followed up properly and information used in longitudinal studies into the effects of ART therapies.
Perhaps addressing the option of embryo adoption prior to treatment, and at the point of successful treatment if embryos are left and the couple have 'finished their family' would help ease this situation.
No strong views.
As long as it is safe, embryos for donation could be kept in storage until transfer, regardless of time. Similarly donated gametes could be kept until they are needed. We would not want to see time pressures resulting in donated gametes/embryos instead being passed over to research. As previously stated, the default position should aim to give the embryo a chance at life.
Data collection is important.
More efforts should be made to follow up on patients and to aim towards well-conducted longitudinal studies into the various forms of treatments, particularly new methods, so that we have good information on the effects of treatment upon the resultant children.
Transparency in the provision of ART is important to maintain public confidence.
We are unclear about the issues of provision outside of NICE guidelines, in that we would expect any guidelines to be in line with the legislation and associated guidance.
Yes, it should remain a legal obligation to offer effective counselling.
It is important that all couples have access to accredited counsellors and therefore the need for their provision needs to be legislated. Because we are dealing with the creation of human life, prospective patients need to be informed of all the implications and realities of treatment before starting, also the issue of how excess ART embryos will be used needs to be considered before they are formed. This means that those patients who have dilemmas regarding excess ART embryos can carefully avoid their creation. It is difficult to see how consent can be fully informed if patients do not have the opportunity to ask questions.
Counselling should be available to all patients. Patients must be encouraged to consider their future decisions regarding any extraneous embryos/gametes, or what a couple will do if one withdraws their consent over the use of embryos. These questions may effect the treatments that they consent to.
Counselling is especially important for those receiving donated gametes, as the complex issues related to this form of treatment are not always immediately obvious to patients. Sometimes the desire for a child is so overwhelming that couples do not take the time to consider the long term meaning of using donated gametes in terms of family relationships, or the pressure it can put on the parents' relationship. The importance of informing resultant children about their origins must be addressed.
We would point the Government to our response to the HFEA's consultation on The Regulation of Donor-Assisted Conception. We hope that the Government will have access to all the original information submitted to the HFEA on this issue, and that they will give this full consideration themselves rather than relying on the analysis of the HFEA on this matter.
From a Christian perspective, it is difficult to support the use of donor gametes. It damages the one flesh principle of marriage and creates inequality in the marriage relationship. In general terms, there are many problems within families of donor offspring, particularly the problem of non-disclosure.
However, if you are going to use donation, it is imperative that a 'market' in human gametes is not created. To avoid this kind of trade, coverage of expenses is the most that should be allowed. Once you allow trade in human gametes, you raise the possibility that vulnerable individuals will be exploited if they are under financial pressure and can alleviate their problems by donation. This would be a particular problem in the case of female donors, due to the potential life-threatening nature of egg harvesting. Keeping all gamete donations on an altruistic basis avoids this kind of coercion, which is particularly important when you consider that it involves the creation of a child who may one day want to know about their donor-parent.
Yes, all donations of human gametes should be altruistic. The same concerns regarding coercion and exploitation apply to research as well as ART.
Again we note the significant overlap of this consultation against other public consultations, such as the Human Genetics Commission's Choosing the Future: Genetics and Reproductive Decision Making, the new HFEA consultation Choices and Boundaries, as well as the HFEA's 1999 consultation on Genetic Testing - Pre-implantation Genetic Diagnosis.
We do not feel inclined to formulate a long response to this question, particularly since we shall also be responding to the HFEA's Choices and Boundaries, other than to re-state that screening and selection of embryos is discriminatory and should be avoided. Certainly, as an issue of relevance to the general community it should be subject to legislation. If it is allowed, it should be strictly on the basis of screening for serious genetic disease.
Once you allow screening out of disabilities or impairments, it is difficult to see how you could avoid screening in for the same features. The basic classification of disabilities and impairment is not straightforward, and, as seen in the case of the deaf couple who selected positively for deafness in their child, will not be a matter of public consensus. Screening embryos also reduces the element of unpredictability in the child one will bear, and reduces the chance of the parent loving their child unconditionally.
In view of the current trend of ever-broadening indications for screening, the regulator should have to consider all indications for screening beyond the limited list of serious genetic diseases – and be fully accountable to Parliament in its decision making.
We are concerned that the Government should carefully consider how screening for and eliminating embryos carrying genetic diseases will have an impact on discrimination against disabled people in our society.
No.
As outlined in question 33, the regulator should regulate which particular uses of embryo screening are allowed, within the legislation, that are beyond a limited list of serious genetic diseases. They should be accountable to Parliament in this and able to justify their decisions.
The legislation should not allow PGD with tissue typing for the purposes of creating a 'saviour sibling'.
Tissue typing is highly discriminatory with a high rate of embryo destruction associated. The use of 'saviour siblings' is morally problematic on these grounds alone. It also holds other risks for the child involved, being born with high expectations regarding their 'usefulness' to the ill child. The issue of consent to donation is also unresolved. Similarly, there are questions as to where the 'donation' stops - having used stem cells who decides about the use of bone marrow, peripheral blood and even a kidney?
This subject matter was partly considered in the HFEA's 2003 consultation on Sex Selection: Choice and Responsibility in Human Reproduction. We recommend that the Department of Health access the original submissions to the HFEA in order to perform their own analysis of the public's reaction on screening sperm for sex selection purposes.
Beyond ensuring the safety of such procedures, we do not have any strong opinions on the ethics of this technique. However, we are concerned about the collection of gametes for research into such procedures. They should still remain subject to legislation and regulatory oversight so as to ensure that the relevant parties are protected from exploitation, proper records are kept, and safety criteria adhered to.
In our opinion, sex selection for non-medical reasons should be banned. It is questionable whether the Science and Technology Committee's report is fully representative of the views submitted to their consultation in this respect, and we note their bias towards taking the liberal position on such matters in the final report that was issued.
Sex selection for any reason is highly discriminatory. Sex selection for social purposes means that completely normal embryos are destroyed merely because of parental preference. In communities where sex selection for social reasons has been longstanding, sex ratio imbalances have occurred.
Assuming that sex would not be described either as an 'ability' or a 'disability' (though in some cultures there is a significant bias against female babies such that being female might be considered a disability) – allowing sex selection is entering the arena of designer babies, since the choice is purely about meeting the needs/desires of the parents.
The prohibition on genetic modification of embryos for reproductive purposes should remain, and only be changeable through Parliament revisiting the issue.
Genetic modification of embryos for reproductive purposes raises problems of safety and efficacy and destructive embryo research will be inherently necessary to overcome these.
Yes. It is imperative that the changes abolishing donor-anonymity are upheld and that donor-conceived children have access to information about their donor.
It has been shown that donor children have issues with identity, and issues relating to their genetic parentage. In much the same way as adoption history once clouded in secrecy became more transparent, donor children have now for the first time been able to access information on their genetic parentage. This however, still relies on disclosure by the birth parents, or independent inquiry of the donor. The change in the law is a positive step in addressing the needs of children conceived by ART rather than purely addressing the desires of the parents.
Parents of donor offspring should be encouraged to be open with their child about their conception so they know to access this information.
It is not necessary that donor offspring should have direct access to identifiable information regarding other donor offspring, particularly when there is no guarantee that all parties are informed of their origins. However, it is important the donor offspring can ensure they are not planning to marry/have children with a half-sibling.
No strong feelings either way.
It is notable that in most cases with lesbian parents, disclosure of origin is done earlier. In heterosexual parent relationships, disclosure of origin is avoided or delayed. The Government should give consideration to how it will encourage parents to be open with their children about their origins.
See 39 – similar issues apply here. Though obviously a homosexual couple will not be having children 'together', so the risks are not exactly the same as for heterosexual couples.
There are issues concerning exposure of information regarding another person, which that person may not yet know themselves. This is a reason why patients contemplating donor gametes should get mandatory counselling, so that all parties are informed of their origins. They could be given non-identifiable data about other offspring without breach of privacy.
The government should give thought to further restricting the number of donor offspring produced by a single donor so that the diversity of the gene pool is not compromised in any geographical area. In addition the instances of 'usage' of gametes from a single donor could be scattered around the country rather than all being through a single clinic. This would require considerable national co-operation on the part of infertility clinics.
The donor should have access, if they so desire, to the number of live births, and possibly what sex they are. If identifiable data is going to the offspring, it is fair that the donor be aware of their existence beforehand.
Yes, but non-identifiable data only. See 41. This would be based on donor offspring needing to know if they were about to form a partnership with a close relation.
Yes, see above.
Honesty should always be encouraged but cannot be enforced. Mandatory pre-treatment counselling is the best option and efforts need to be made to improve this service. The Government should give more thought to how it will encourage parents to tell their children about their origins.
Yes. This is important for public scrutiny and transparency, as much as patient interest. However, we are wary that competitiveness between clinics might be fostered, which whilst encouraging some to excellence, may encourage others to 'cheating'. The regulatory body will therefore need to ensure that it gets the right balance between rating a clinic based on 'outcomes' and also considering other relevant factors – such as treatments used, counselling services, patient advice and interaction etc. Given good counselling and support a couple without a successful pregnancy may still find the process of IVF treatment useful in helping them come to terms with their situation, and perhaps consider other options such as adoption or fostering.
Yes, definitely.
In view of the rapid rate of development in ART, someone should be recording the data for follow-up regarding the safety of ART.
Yes
We agree that all medical consultations, including those involving ART, should involve some protection of privacy of the patient, as necessary to maintain doctor-patient confidentiality.
Surrogacy should be prohibited because of the risks to all parties involved.
Clarity regarding who are the legal parents should be a priority as soon as the child is born.
As donor gametes are almost always involved, it should be practised within the safeguards of the HFE Act.
This question serves to highlight the confusion that can arise from infertility treatments, particularly where donated gametes are used.
From a Christian perspective, it is difficult to support the use of donor gametes. It damages the one flesh principle of marriage and creates inequality in the marriage relationship.
The Government needs to address the issues raised by these procedures:
We uphold the legal assumption that the birth mother is the mother, and the genetic father the father. We have no further advice on how the Government should find its way around the mayhem it has created for both personal identity and family relationships by allowing donor gametes and various other combinations of infertility treatments.
No further comment.
We uphold the legal assumption that the birth mother is the mother, and the genetic father the father. We have no further advice on how the Government should find its way around the mayhem it has created for both personal identity and family relationships by allowing donor gametes and various other combinations of infertility treatments.
We uphold the legal assumption that the birth mother is the mother, and the genetic father the father. We have no further advice on how the Government should find its way around the mayhem it has created for both personal identity and family relationships by allowing donor gametes and various other combinations of infertility treatments.
We disagree with the current assumption being made by the HFEA, the media and the Government that homosexual couples should have access to infertility treatments. ART should be used only for medical infertility not social infertility.
We are opposed to destructive human embryo research as it devalues human dignity. Destruction of nascent human life is an attack on the most vulnerable members of our society and it violates international codes of human rights such as the 1948 Declaration of Geneva. We recommend serious consideration of the alternatives to embryo research and commend the positive results of adult stem cell research. In no circumstances should the current 14 day limit be increased.
We disagree.
The current prohibition should remain.
Somatic cell nuclear transfer should be prohibited in all circumstances. It is folly to think that it is possible to have a law that allows therapeutic cloning but not reproductive cloning. The technology is the same in either case, and once it is possible to clone human beings it will be impossible to police whether they are destroyed in research or implanted in a woman. Human embryos are transferred into women's uteri all the time in ART clinics and it is impossible to distinguish a cloned embryo from a fertilised embryo under the microscope. There are many people in the world who have claimed that they want to try to clone human beings but that is no reason to relax ethical guidelines in this country. A clone is a clone whatever its intended use.
Whilst a clone, from its initial creation to adult life is still a human and therefore should be treated with respect, it brings with it a complex set of ethical issues. There will be a broad set of expectations on its performance and personality that are unhelpful given that genetic inheritance is only one aspect of character development and expression. Another weakness of reproductive cloning is the early degenerative changes that have been demonstrated in animal clones.
Creation of any form of human embryo specifically for research should be prohibited, see above.
We are opposed to destructive research on human embryos.
The law should not permit genetic engineering of an embryo. Laws are supposed to protect the weak and vulnerable; the human embryo is deserving of utmost protection and respect yet remains the most discriminated human being in Western society. This must not be taken lightly and the abuse must stop.
The law should not permit the creation of human-animal chimeras. Once more we underline the unique nature of human life and politely request that our nature be upheld. A chimera of this type violates the natural order and should be prohibited, whether in vitro or in vivo.
Whilst we oppose any research on human embryos, we agree with the Government's response to Recommendation 104 of the Science and Technology Committee's Report that if you have to have embryo research, it must be carefully monitored and there should be national oversight to ensure compliance with the law. Even given the lack of consensus in the community regarding the moral status of the human embryo, most people think they are special and should be treated carefully.
We agree with the need to use a centralised agency to review the research. As mentioned, there should be a requirement that all research be justified on scientific grounds and be impossible without using human embryos. Researchers should be vetted for competency and the facilities should be adequate. Research should be for a significant purpose, either increasing knowledge or innovative in some way. Informed written consent is vital. The standard of expertise required to achieve this level is considerable and unlikely to be consistent nationally if only regional centres were employed.
Yes, see 62.
We are opposed to trade in human gametes, and warn against any moves that could place pressure on people to donate. Eggs and sperm should not be sold for profit to research agencies or to IVF clinics. Any use of gametes must be consented to by the donor.
This should be prohibited. Destroying one human being for the purposes of treating another sets a higher value on the older human and devalues the human dignity of the other. We should avoid this discriminatory kind of behaviour.
We recognise that it is a highly emotive arena. Outcome potentials have been used to justify this type of research, and built up in the media without full exploration of the problems of the research and proposed treatments. Even some prominent scientists are now recognising that the potential has been 'over-hyped' and there have been many calls for more honesty in this public debate. Much has been promised without hard evidence that these fantastic cures can be achieved.
We have serious reservations about RATE combining previous HFEA and HTA because the implication is that embryos can be equating with tissue or organs – whereas in reality they are whole human organisms. A human being and a kidney are not biologically analogous nor morally equivalent.
We believe that any regulatory body should consist BOTH of lay AND professional members; and that its make up should also reflect the whole range of views on relevant ethical issues present in our multicultural and multifaith society. The HFEA by contrast consisted almost entirely of people who held liberal views on the use of donor gametes and the status of the human embryo.
The list of responsibilities is good.
Yes, this function should continue.
Yes
Legislation needs to make the role or RATE clear. Structure and function along with how changes to the guidance will be monitored and evaluated needs to be clear.
No comment
We have no strong views. However, if new regulations are to be taken seriously by those at the coalface then they need to be enforced effectively.
We believe that as a general principle the power to shift boundaries in ART should be returned to parliament where it rightfully belongs and that the main role of the regulatory body be to ensure that statutory principles are upheld; rather than pushing boundaries in practice and research in the way that the HFEA has done. We would also like to see a broader cross-section of people included in any new regulatory authority and in any body advising on ethics –reflecting more accurately the diversity of views our multicultural and multifaith society.
As stated in the body of our submission we have serious reservations about the use of donor gametes and would like to see a ban on their use. We would also like to see a ban on creating embryos for research and on the use of spare embryos in research. We believe that a bare minimum of embryos, if any, should be frozen and that any frozen embryos should be given every chance of survival through implantation in biological or adoptive parents. We would also like to see abolition of the provision for abortion up until term for babies with serious handicap introduced by the 1990 Act and a substantial reduction of the maximum age for abortion to reflect changes in public and parliamentary opinion and changes in neonatal survival rates with advances in intensive care for premature babies. We believe that in any legislation the rights of the chid should be paramount. We believe the make up of any new regulatory authority should reflect the diversity of society's composition in particular with respect to views on ethics, and that a national ethics committee with similar composition be set up to advise both government and the regulatory authority on these issues.
Steven Fouch (CMF Head of Communications) 020 7234 9668
Alistair Thompson on 07970 162 225
Christian Medical Fellowship (CMF) was founded in 1949 and is an interdenominational organisation with over 5,000 doctors, 900medical and nursing students and 300 nurses and midwives as members in all branches of medicine, nursing and midwifery. A registered charity, it is linked to over 100 similar bodies in other countries throughout the world.
CMF exists to unite Christian healthcare professionals to pursue the highest ethical standards in Christian and professional life and to increase faith in Christ and acceptance of his ethical teaching.
