16 October 2011

Donor Anonymity

Today's Sunday Age highlights disagreement in Victoria about the removal of anonymity for sperm donors, ie people who donated on the basis of an express agreement that their identity would not be revealed.

Former Victorian Governor (and IVF specialist) David De Kretser has urged the state parliament to respect those donors, consistent with submissions to the Senate Legal & Constitutional Affairs References Committee regarding its 'donor conception' report highlighted earlier this year.

The matter is being considered by the Victorian Parliament's Law Reform Committee in its Inquiry into Access by Donor-Conceived People to Information About Donors. (Submissions in 2010 and 2011, are accessible here.)

The Sunday Age states that the Committee -
has begun an inquiry into whether all donor-conceived children should get access to information about their biological parents.

At present, the law varies depending on when the donation was made, meaning people conceived before 1988 do not have the right to know about their donors because they were granted anonymity at the time.

In his submission to the review, Professor de Kretser - who helped set up the first donor insemination service at the former Prince Henry's Hospital - said it would be "unfair" to disregard the privacy of the thousands of men who donated on the condition of anonymity.

But while the right of sperm donors to remain anonymous should be preserved, more should be done to encourage them to meet their offspring voluntarily, he said. For instance, where contact details are available, "a discreet approach" could be made to donors asking them to consider making their identity known to their offspring.

"If they were willing to consider this, then an appropriate counsellor could be put in place and it would then be up to the donor, if he would be willing to be identified," Professor de Kretser told The Sunday Age.

The question of whether donor-conceived children should be granted information has always been vexed, with the law based around a three-tiered system. People conceived using sperm donated after January 1 1998, have unconditional access to information about their donors; those conceived using sperm donated between July 1 1988, and December 31 1997, can access information about their donors if their donor consents; but those conceived before 1988 do not have the right to access because donors have been granted anonymity.
One of the most cogent discussions is that provided in the August 2011 submission by the Victorian Privacy Comissioner, which comments that -
It is important to note the prevailing circumstances of donors in the pre-1988 world. Generally, donors entered into donation arrangements with the medical provider directly and were assured confidentiality, and similarly agreed not to seek the identity of children conceived.1 Donors were commonly young, receiving inadequate counselling and unaware of the magnitude of their donation, and often compensated with medical treatment, STD testing, money or course credits.

It is equally vital to note the strong interest in donor-conceived individuals being able to obtain information about their donors. Obtaining one’s own personal information is in fact a privacy right in itself. Information relating to the donor’s medical and genetic history, and a person’s right to know their genealogy, are extremely important concepts for donor-conceived individuals, and one that individuals with known parents may take for granted. The information sought by donor-conceived persons may appear routine – a photograph or simply an answer to the question of ‘what is he/she like?’ It is possible that denial of such information could affect the physical or mental health of a donor conceived person, although it is noted that due to advances in genetic testing for heritable disease this appears less the case than previously.
The submission went on to comment that -
In my view, the best option for balancing the rights of both donors and donor-conceived individuals is essentially similar to that recommended by the Victorian Law Reform Commission (VLRC) being:
Donors (are) to be contacted and asked to consent to the release of information only upon request for information by a donor-conceived person.
This approach is to be preferred to that of recontacting all donors and asking all donors to re-consent to identification. As pointed out by the Victorian Assisted Reproductive Treatment Authority (VARTA), that option would be time consuming as it would require donors to be contacted regardless of whether an application is received.

It is entirely possible that whilst some donor-conceived individuals may have a strong need for information about their donor, other donor-conceived individuals may not. It would be somewhat impractical to seek the consent of donors to release information about them in the absence of a specific request in the future.

Secondly, such a procedure would replicate the provisions for access to information by donor-conceived people conceived using gametes donated between 1 July 1988 and 31 December 1997.

Additionally, a consent-based procedure may in fact increase the data quality and accuracy of information to be made subsequently available to donor-conceived individuals. Donors could, during any consensual-based release policy, be afforded the opportunity to check to ensure that the information to be provided to the donor-conceived individual is accurate and correct, and potentially add further information if they wish. Such an opportunity could actually result in better information provision for donor conceived persons.

A note of caution

Firstly, it should be noted that any proposed contact itself will be a form of privacy imposition, albeit a lesser one than disclosure of one’s personal information, but an imposition nonetheless. Donors who were assured confidentiality at the time of donation would not ordinarily expect contact from any authority purporting to gain their consent to disclose their personal information to a donor-conceived individual. Donors, for example, may not have informed their families of their past donation(s). Great care needs to be taken in initiating contact with any donors who were assured confidentiality.

Data quality issues may also be considerable when making initial contact with donors. For example, contact details will need to be carefully verified and contact made in a confidential, appropriate fashion. The possibility of an individual being wrongly identified as a donor and being sent requests for consent to release their information could be quite stressful for the recipient involved.11

Secondly, gaining proper, informed consent from donors for any release of the donor’s personal information is vital. It is fundamentally important that donors are in a position to provide truly voluntary and informed consent as to how their personal information will be disclosed to donor-conceived individuals. This will include, at a minimum, explaining:
• that the decision to consent to disclosure is a voluntary one;
• what precise types of personal information of the donor is proposed to be disclosed;
• who will receive the information (presumably the donor-conceived individual);
• whether the donor wishes to receive contact from the donor-conceived person and if so, how that is to occur, and
• explanation of the impacts (positive and negative) a decision to consent to disclosure may have on the donor.
It may be necessary that donors receive some level of counseling before providing consent. This is particularly the case with pre-1988 donations, given the possibility that contact from any authority may be quite an unexpected event for the donor, and the donor may not have had the opportunity to fully consider the ramifications of a request.