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Response to a Call for Evidence issued by the Nuffield Council on Bioethics as part of its project Donor Conception: Ethical Aspects of Information Disclosure

15 May 2012
This policy document is a response by the Progress Educational Trust (PET) to a Call for Evidence (.doc 236KB) issued by the Nuffield Council on Bioethics, as part of the latter's project Donor Conception: Ethical Aspects of Information Disclosure.
PET is grateful to John Parsons and Professor Marcus Pembrey for their contribution to this document.

1. What ethical concerns arise in the disclosure, or not, of information in connection with donor conception?
The principal ethical concern connected with donor conception and the disclosure of information – at least in the present social and political climate – arises from the fact that donors, donor-conceived people and their families may ascribe emotional importance to information about one another. This prompts the ethical questions of whether, when, how, by whom and to whom such information should be made available.

2. Is the disclosure of a child's donor conception essentially a matter for each individual family to decide? What if there is disagreement within the family? Who else should have a role in making this decision?
In our view, disclosing the fact that a child is donor-conceived should indeed be a matter for each individual family to decide. If there is disagreement about disclosure within the family, then it is incumbent upon family members to negotiate the matter themselves. It is the prerogative of any family member who knows that a child is donor-conceived to disclose that information to, or withhold that information from, the child in question and/or any other person. If a non-family third party reveals that a person is donor-conceived, or reveals information about a donor, then this should be a consequence either of the donor-conceived person seeking out the information on their own initiative, or of a family member having previously been indiscreet. This should never be a direct consequence of the third party's initiative.

3. What information, if any, do parents need about a donor in order to enable them to carry out their parenting role? Please explain.
It is not axiomatic that the parents of donor-conceived children need any information about the relevant donor(s), in order to carry out their parenting role. It is possible for the parents of donor-conceived children to ascribe emotional importance to any type of information about donors, in which case access to such information may be a necessity in the opinion of those parents. While parents of donor-conceived children should have access to information (to which they are legally entitled) that the donor has provided, it does not necessarily follow from this that donors should be encouraged to give more than the rudimentary information that has been legally required of them since the entitlement to donor anonymity was removed in the UK. It is not the place of the UK fertility regulator, or any other authority, to make or encourage any pejorative assumptions about the amount of information that a gamete donor provides.

4. What information might a donor-conceived person need about the donor, either during childhood or once they become adult? Please explain.
It is not axiomatic that donor-conceived people, during childhood or adulthood, need any information about the donor(s) from whose donation they were conceived. It is possible for donor-conceived people to ascribe emotional importance to any type of information about donors, in which case access to such information may be a necessity in the opinion of those donor-conceived people. While donor-conceived people should be able to obtain, on request, information (to which they are legally entitled) that the donor has provided, it does not necessarily follow from this that donors should be encouraged to give more than the rudimentary information that has been legally required of them since the entitlement to donor anonymity was removed in the UK. It is not the place of the UK fertility regulator, or any other authority, to make or encourage any pejorative assumptions about the amount of information that a gamete donor provides.

5. How significant is information about the medical history of the donor and the donor's family for the health and wellbeing of donor-conceived offspring? Do you know of any examples or evidence in this area?
It is always a remote possibility that medical information about the donor and their family will be significant for the health and wellbeing of donor-conceived people, but it is far from likely. Donors in the UK are screened for medical problems in accordance with standard guidelines. While these guidelines, and the parameters of the fertility clinic's professional duty of care to the donor, are not perfect and should be kept under regular review, the fact remains that a level of assurance as to the health of donors is standard, when this is not true of people who conceive without donation. It is also worth noting that medical information about the donor and their family can have a negative impact on the health and wellbeing of donor-conceived offspring by creating unnecessary anxiety, especially if this information is not properly contextualised. (If UK fertility patients receive treatment in other countries and jurisdictions, then the answer to the question above may vary, depending on what donor screening procedures are in place and what information about the donor is available in the location where treatment is received.)

6. Where information about inherited medical risk becomes apparent after donation has taken place, who should be told, and by whom?
It would be an exceptional scenario in which it were discovered, after donor conception had already taken place, that a donor might have transmitted to donor-conceived offspring a condition so serious that notification of the donor, the donor-conceived offspring or the family of either party was warranted. 'Medical risk' is not a clear-cut concept in such situations, because such risk has two components – the chance or probability of a medical problem occurring, and the extent of damage or burden to the patient. The former is largely a matter of scientific knowledge, empirical recurrence data and clinical diagnostic skills (although even here there is the subjective element of what constitutes too high a chance in light of the burden), while the latter has a considerable subjective element. Given these subtleties, and given the unlikelihood of the scenario implied by the question above, we would be reluctant to suggest any generic provision for such a scenario. Anecdotally, we know of one relevant instance in the UK, in which a donor-conceived child was born with a condition that meant that clinicians felt duty-bound to notify the relevant sperm donor of possible risk to himself and/or his existing or prospective offspring. The sperm donor was successfully notified without undue impediment, and all of this occurred prior to the removal of entitlement to donor anonymity. We conclude from this that the flexibility of the system, and the parameters of clinicians' duty of care, are sufficient to address such scenarios as and when they occur.

7. What is the impact on donor-conceived offspring of finding out about their donor conception at different ages: for example medically, psychologically and socially? Do you know of any examples or evidence in this area?
It has been well established that there are few, if any, adverse consequences for donor-conceived children of their parents telling them at a young age that they are donor-conceived. Some evidence suggests that disclosure can become more difficult over the course of donor-conceived people's childhood and even more difficult after donor-conceived people reach adulthood (see, for example, Jadva et al, 'The experiences of adolescents and adults conceived by sperm donation: comparisons by age of disclosure and family type', Human Reproduction vol 24 no 8, 2009). Such evidence notwithstanding, we believe that whether, when, how and by whom disclosure takes place are decisions that should remain in the hands of the parents of donor-conceived children.

8. What is the impact on donor-conceived offspring of making contact with either the donor or any previously unknown half siblings? Do you know of any examples or evidence in this area?
The impact on donor-conceived offspring of making contact with the donor, or with any previously unknown half-siblings, is socially and culturally mediated. Whether or not such contact has a significant impact, and whether this impact is positive or negative, is at least partially contingent upon the significance that society as a whole tends to ascribe to biological relationships. Such perceived significance may also be magnified by secrecy, inasmuch as the longer one knows of the existence of genetic relatives without knowing their identity, the greater the scope to be curious about and to speculate about them, and the more acute the potential positive or negative impact of eventually making contact. For examples in this area, we would recommend examining the work of the Donor Sibling Registry in the USA.

9. What interests do donors and donors' families have in receiving any form of information about a child born as a result of the donation?
Donors and their families may be interested in any number of things about children conceived from their donation, but the only information to which they are legally entitled in the UK is the number of children born as a result of their donation, and the sex and year of birth of those children. There is therefore an asymmetry, whereby there is more information about donors to which donor-conceived people and their parents are entitled, than there is information about donor-conceived people and their parents to which donors are entitled. We believe that this asymmetry is entirely appropriate and fair, inasmuch as donation should be made in a spirit of generic good faith, without there being a concomitant expectation of specific information about any resulting offspring. If donor-conceived people and their families prefer not to make information available to donors and donors' families, then this is entirely within their prerogative. (Some have argued that if donors express an interest in children conceived from their donation then this is a good indication of their moral character, but in our view donors should be screened only on medical grounds and not on moral grounds.)

10. What responsibilities arise in connection with the disclosure of information? Where do these responsibilities lie? (for example with government, fertility clinics, professionals or families?)
The principal responsibility that arises in connection with the disclosure of information is the responsibility of an authoritative body to maintain a central and secure register of information pertaining to donor conception, and to administer this register competently. For the past 20 years, such a register has been maintained in the UK by the Human Fertilisation and Embryology Authority (HFEA) – a body which currently faces abolition, with the consequence that responsibility for the register is due to be transferred elsewhere. Clinicians are responsible for collecting donor and patient details and submitting them for inclusion on the register, but responsibility for the register itself lies ultimately with the Government, which empowers the HFEA and will empower the latter's successor(s). If responsibility for the register is indeed transferred away from the HFEA, then it is of the utmost importance that the centrality, security and integrity of the register is maintained.

11. What support is required in connection with these responsibilities?
Counselling should be available, but not mandatory, for donors and for the parents of donor-conceived children before and after donor conception. Such counselling should be provided by clinics, as a condition of their license to perform fertility treatment. There is also scope for various types of organisations to provide support, advice and counselling to the parents of donor-conceived children, regarding matters such as whether, when and how to disclose the fact that a child is donor-conceived to the child in question. However, it should remain the prerogative of parents whether or not they avail themselves of, or act in accordance with, such support, advice or counselling.

12. Do you have any other comments? Please highlight any relevant areas you think we have omitted, or any other views you would like to express about information disclosure in the context of donor conception.
The significance ascribed to biological relationships is, to an underappreciated extent, determined by prevailing cultural trends. Donor conception policy contributes to the prevailing culture, inasmuch as it not only seeks to meet the needs and desires of people involved in donor conception, but also shapes these same needs and desires going forward. There is potentially no limit to the types of information to which donors, donor-conceived people and their families will ascribe emotional importance. Following the removal of entitlement to donor anonymity in the UK, there is qualified – and, in our view, adequate – scope for those involved in donor conception to seek out information about one another. Incorporating further openness into the system would risk promulgating the idea that biological relationships deserve to be invested with emotional significance, when this is something that people should have the latitude to decide for themselves.