Of family and finance: Israeli citizens without rights and HFEA remuneration

Living in Israel, where gamete donor anonymity still rules supreme, I confess I envy the UK's clear focus on the welfare of the donor conceived child and the evolution of the legal rights of offspring (children, adolescents and adults). This culminated in April 2005 with the stripping of donor anonymity, and is evident in the Human Fertility and Embryology Authority's (HFEA) facilitation of the re-registration of anonymous donors and offspring's search for donors and/or siblings.

Sadly, amongst Israelis, it appears that the rights and needs of the donor conceived come last, if at all, amongst those of the various adult stakeholders involved in assisted reproduction. Not only are the donor conceived not allowed to learn the identity of their biological donor parent, but they are blocked in their search for half-siblings.

Sparse donor details are provided upon inquiry, with some couched in general terms so as to conceal identity. While a general area of study may be mentioned, specific details regarding when and where the donor studied, or if he or she actually graduated, are not revealed (as is customary in the US, which, lacking a federal policy, has a preponderance of anonymous donors).

Moreover, the recipient is not informed of the donor's date of birth, how old he or she was upon donating, nor the time span of donation. While the existence of half-siblings may be acknowledged, their number, gender and dates of birth are also concealed. Often, details are only provided orally.

If nothing else, this deliberate lack of transparency protects fertility clinics and sperm banks from accountability with respect to the exact number of offspring per donor allowed in the context of general recommendations (1). It also prevents the voluntary exchange of relevant medical information regarding siblings among donor families sharing the same donor.

As offspring grow up, both they and their parent(s) often wish they had brothers and sisters. When circumstances conspire to make it impractical to have a second child this wish is thwarted, and the possibility of contacting half-siblings might provide an extended family they could all enjoy. This is particularly true for Israel, a country with a great emphasis on family and whose size (approximately that of the American state of New Jersey) is small enough to make contact feasible.

With the advent of search engines such as UK DonorLink and the US-based but worldwide Donor Sibling Registry (DSR) it has become possible for those families lucky enough to find a match to make contact. Since its inception in 2000, just under 9,000 people have found one via the DSR alone. The probability of finding a match increases when the donor's known details include a non-identifying donor code (provided to both donor and recipient by the US clinic or sperm bank).

Recent research findings have unanimously shown that siblings and their families hope for contact, including heterosexual families and those with more than one child. And when offspring have actually met half-siblings it has, by and large, been a win-win situation (2). In the largest study to date, 85 percent of offspring (34 individuals) who met half-siblings reported 'very positive' or 'fairly positive' experiences, with only one person having a negative one. A survey of donor experiences gave similar results (3).

In Israel, although allowed to find out if they are related upon marriage, numerous offspring remain vulnerable to risks of consanguinity and associated genetic defects (4). Such concerns are shared by young adults and their families, propelling Orthodox Jews to use sperm of non-Jewish donors.

A lack of updated medical or genetic data, as well as more personal information regarding their invisible donor — such as their name, a picture, an explanation of why they donated, or background about their education or interests — confounds the donor conceived child's natural curiosity. At the same time it thwarts their developmental need to anchor and consolidate their sense of identity and selfhood (5-7).

Additionally, given this mandatory cloak of secrecy, some parents choose to keep the birth circumstances from their children, often rationalising it as a way of sparing them unnecessary angst. Much has been written about the consequences of such family secrets and the need for a parental relationship based on honesty (7).

Although sperm banks are loth to share this information, Israeli sperm donors are paid anywhere between 300-600 shekels per donation (roughly £50-100). The Egg Donation Law (2010) permits remuneration of 'voluntary' egg donors as specified by the State (8). Since demand is always greater than supply, without payment a dire shortage of Israeli donors is seen as inevitable. This is especially so as no systematic attempt has been made to educate the general public regarding the need for gamete donors and recruitment campaigns have not been publically implemented, despite reports of successful experiences abroad. Furthermore, societal recognition for donors is almost non-existent, and secrecy and shame (especially with respect to sperm donation) prevail.

The perennial fear of lack of donors is used to whip back into line those brave enough to contemplate change in the status quo (for example, the Aloni Commission in 1994). This may involve the stepwise relinquishing of complete anonymity and concomitant provision of non-identifying information or, heaven forbid, the abolition of anonymity for new donors (4,9). The fertility industry and some of its beneficiaries, as well as the media, view progress in human rights as a deathblow to Israeli sperm banking (9-11).

Despite being part-British I am, in essence, an outsider to the lively UK debate surrounding recent HFEA revisions (12). From where I stand, the rights and needs of the donor conceived take centre stage over and above the ongoing debate concerning donor remuneration. This debate is, if you will, one of the 'rich'; the well-earned luxury of a society that has kept the welfare of the donor conceived well within its sights.