Adop­tion was a scan­dal of 20th-cen­tury Ire­land. Will the rights of donor-con­ceived chil­dren be its 21st-cen­tury equiv­a­lent?

The Irish Times - Weekend Review - - FRONT PAGE - Paul Cullen Health Cor­re­spon­dent

It is only in re­cent years that so­ci­ety has wo­ken up to the trauma suf­fered by many adopted peo­ple through not know­ing their birth par­ents. For many, greater open­ness has come too late: the wrong can never be rec­ti­fied, as his­tor­i­cal records are miss­ing or may never have ex­isted.

Is an anal­o­gous sit­u­a­tion de­vel­op­ing to­day for chil­dren con­ceived through the use of anony­mous sperm and eggs? They will never know the full de­tails of their ge­netic parent­age, and, it is in­creas­ingly as­serted, their iden­tity rights will be com­pro­mised as a re­sult.

“There is a grow­ing un­der­stand­ing of the im­por­tance of a sense of iden­tity for ev­ery per­son,” says Deirdre Mad­den, pro­fes­sor of law and ex­pert in med­i­cal ethics at Univer­sity Col­lege Cork. “It is not just about psy­cho­log­i­cal well­be­ing; there may also be health is­sues, for ex­am­ple, where ge­net­i­cally in­her­ited dis­eases oc­cur.”

The ques­tion has been around since Louise Brown be­came the world’s first “test tube baby”, in 1978; the first baby con­ceived in Ire­land us­ing IVF was born less than a decade later. Brown was ac­tu­ally con­ceived in a Petri dish, us­ing her par­ents’ egg and sperm, but as the tech­nol­ogy has de­vel­oped the use of do­nated ma­te­rial has be­come in­creas­ingly com­mon.

In the early days, when it was feared that few peo­ple would come for­ward, donors were en­cour­aged to give anony­mously, and less thought was given to the rights of the re­sult­ing child.

The in­flu­en­tial UK philoso­pher Mary Warnock said that egg or se­men donors should re­main anony­mous and should not know the iden­tity of the cou­ple they helped, in or­der to en­sure that peo­ple were will­ing to be donors. Years later she changed her mind and rec­om­mended that chil­dren con­ceived us­ing do­nated sperm be able to trace their bi­o­log­i­cal fa­thers.

It was only as a gen­er­a­tion of donor-con­ceived chil­dren were grow­ing up that ques­tions be­gan to be asked about their right to in­for­ma­tion about their ge­netic par­ents. And it is only as th­ese chil­dren have reached the age of ma­jor­ity – which in Ire­land is only in the past decade – that th­ese ques­tions have ac­quired a greater ur­gency.

“Sci­ence has moved on since then, and so has so­ci­ety,” says Prof Mad­den. “We now have stud­ies that show the im­por­tance of iden­tity for chil­dren in ado­les­cence, and the need for chil­dren’s wel­fare to come first. It fol­lows that they should have a right to in­for­ma­tion about their ge­netic in­her­i­tance.”

Ire­land’s de­lay

Yet al­though many coun­tries have up­dated their laws on as­sisted hu­man re­pro­duc­tion, and have banned anony­mous do­na­tion, the Repub­lic of Ire­land has yet to join them.

A law has been passed pro­vid­ing for the reg­u­la­tion of donor-as­sisted hu­man re­pro­duc­tion. The Chil­dren and Fam­ily Re­la­tion­ships Act 2015 bans anony­mous do­na­tion and pro­vides for the set­ting up of a “na­tional donor-con­ceived per­son reg­is­ter”, so chil­dren can ac­cess in­for­ma­tion once they are 18.

Two years on, how­ever, the rel­e­vant parts of the Act have yet to take ef­fect. There is still no sign of the promised reg­is­ter. Twelve years af­ter a gov­ern­ment-ap­pointed com­mis­sion rec­om­mended that any child born through the use of do­nated ma­te­rial should be able to iden­tify the donor, this has still not come to pass.

A re­quest to the Depart­ment of Health for a brief­ing elicited a one-line re­sponse say­ing that parts 2 and 3 of the Act will be com­menced later this year.

In the mean­time the pop­u­lar­ity of donor con­cep­tion con­tin­ues to grow, as does the num­ber of fer­til­ity clin­ics. No one knows for cer­tain how many donor-con­ceived chil­dren are born in Ire­land each year; the fig­ure is likely to be in the hun­dreds.

Wide range

The cat­e­gory em­braces a wide range of al­tru­is­tic and com­mer­cial ar­range­ments reached in Ire­land and abroad. Cus­tomers in­clude cou­ples and sin­gle peo­ple, both het­ero­sex­ual and ho­mo­sex­ual.

Most peo­ple go through a clinic, but it is rel­a­tively sim­ple to buy sperm on­line and make your own ar­range­ments. No of­fi­cial fig­ures are gath­ered, and there is lit­tle over­sight.

Most of the sperm used in Ir­ish fer­til­ity clin­ics comes from Den­mark, where Cryos In­ter­na­tional, which op­er­ates the world’s largest sperm bank, says there have been at least 1,400 preg­nan­cies among its Ir­ish cus­tomers since 2000.

Un­til 2007 all the sperm Cryos sold to Ir­ish donors was anony­mous, as it was il­le­gal for the com­pany to use “nonanony­mous” donors. Since then nonanony­mous do­na­tions have in­creased year on year. In 2016 they ex­ceeded anony­mous do­na­tions for the first time. ( Cryos points out that even anony­mous donors may be iden­ti­fi­able through DNA test­ing. The dis­tinc­tion it makes is that it will never re­veal the iden­tity of an anony­mous donor, whereas its nonanony­mous donors have agreed that donor chil­dren can con­tact them once they turn 18.)

Cryos says that les­bian cou­ples, and sin­gle cus­tomers, seem to pre­fer nonanony­mous donors, and this is driv­ing the trend rather than changes in leg­is­la­tion in­ter­na­tion­ally.

Among het­ero­sex­ual cou­ples, where male in­fer­til­ity may be an is­sue, there has his­tor­i­cally been a pref­er­ence for anony­mous do­na­tion.

‘I wanted the do­na­tion to be open’

“Claire” is one of the cus­tomers who have suc­cess­fully con­ceived – twice – us­ing sperm pur­chased from Cryos. “Peo­ple think you flick through a cat­a­logue, look­ing for a par­tic­u­lar type of donor, but ac­tu­ally it came down to a choice be­tween three or four. I wanted the do­na­tion to be open, and the blood groups to match, and the donor had to be proven, with his own chil­dren.”

With a back­ground in sci­ence, she was keenly con­scious of the de­cline in a woman’s fer­til­ity that goes with the pas­sage of time.

“At 36 I re­alised that even if I met some­one it would prob­a­bly take four years be­fore we tried for a baby. I knew my chances of con­ceiv­ing were go­ing to be slim the older I got. Equally, it was go­ing to take years to try to adopt.

“Yet I al­ways wanted to be a mother. I would have loved to have a nu­clear fam­ily. That didn’t work out for me, but it didn’t mean I couldn’t have a fam­ily.”

Her ini­tial vis­its to a clinic re­vealed fer­til­ity prob­lems. “I feel blessed now that I went, be­cause it meant I found out quickly. It helped to con­vince me I was do­ing the right thing and I didn’t have much time left.”

In-vitro fer­til­i­sa­tion was a “re­ally tough route” for a sin­gle woman, she says. “It’s not just the phys­i­cal and emo­tion toll; it’s also

dearer for us, as we have to pay for the sperm do­na­tion as well.”

It helped that her par­ents, in the west of Ire­land, were sup­port­ive, as were neigh­bours and friends in her ru­ral com­mu­nity. Af­ter two years of try­ing, Claire con­ceived on her sec­ond round of IVF and gave birth to a son. She now also has a baby girl, con­ceived with sperm from the same donor – “di­b­lings”, as they are known.

Be­fore their birth Claire was pro­vided

with di­verse in­for­ma­tion about the donor: where he has trav­elled in the world, his taste in mu­sic, med­i­cal in­for­ma­tion, the fact that he is mar­ried. “Be­fore coun­selling I hadn’t been aware there was a choice about anonymity. But I de­cided I wanted to leave the door open for my chil­dren for the fu­ture. I didn’t feel it was my choice. If they want to find their bi­o­log­i­cal fa­ther I’ll help them.”

Claire is a mem­ber of the Sin­gle Moth­ers By Choice Face­book group, which serves as a fo­rum for women to dis­cuss is­sues they have in com­mon. The group in­cludes two women who have adopted chil­dren, but the rest used the donor-con­cep­tion route.

The group has about 60 mem­bers, most of them pro­fes­sional women jug­gling child­care with their ca­reers, ac­cord­ing to “Jan­ice”, the ad­min­is­tra­tor. A sep­a­rate “wait­ing” group, cre­ated as a fo­rum for sin­gle women un­der­go­ing fer­til­ity treat­ment, has 100 mem­bers, she says.

Rights ‘play-off’

Not ev­ery­one shares the in­creas­ing sen­ti­ment favour­ing open do­na­tion. Dr John Water­stone, med­i­cal di­rec­tor of the Water­stone Clinic in Cork and pres­i­dent of the Ir­ish Fer­til­ity So­ci­ety, be­lieves the pro­posal to cre­ate a reg­is­ter is a fad.

“In some coun­tries they have lurched in the op­po­site di­rec­tion. In Spain, for ex­am­ple, anonymity is en­shrined in law. Both views are wrong, be­cause they don’t al­low peo­ple choice. We shouldn’t be forc­ing peo­ple who are pur­su­ing this op­tion to be ei­ther anony­mous or iden­ti­fi­able.”

Dr Water­stone says he is not against donor-con­ceived chil­dren be­ing pro­vided with med­i­cal and other in­for­ma­tion through their par­ents, so long as it is non­iden­ti­fy­ing. There is al­ways a “play-off” be­tween the rights of par­ents and the rights of chil­dren, he be­lieves.

“I’d hate to find that, if I had do­nated sperm, a 21- year- old son would come knock­ing on the door, say­ing, ‘Hello, Dad’. That’s when it can get messy.”

He asks whether it is fair on a cou­ple who, un­able to have a baby, em­bark on the donor-con­ceived op­tion, and “then spend all those years chang­ing nap­pies and wait­ing out­side the teen dis­cos”, to have a third per­son, the donor, “in­trude” in their lives.

In Dr Water­stone’s view a child is not “hard done by” by not know­ing the full de­tail of his or her ge­netic her­itage. The idea that donor-con­ceived chil­dren are en­ti­tled to know their iden­tity is “ut­terly mean­ing­less”.

De­scrib­ing the Act’s pro­posal for a reg­is­ter as overly co­er­cive and un­con­sti­tu­tional, he vows to chal­lenge it legally if it is in­tro­duced.

A move to a nonanony­mous-only sys­tem of do­na­tion would “kill off” egg do­na­tion in Ire­land and prompt many cou­ples re­quir­ing do­nated sperm to go over­seas, to coun­tries where anonymity is guar­an­teed, he says. “Peo­ple want pri­vacy in their re­pro­duc­tive laws, and they should get it.”

Prof Mad­den makes the point that al­though sperm do­na­tion rates dipped in coun­tries where nonanony­mous do­na­tion was banned, they tended to re­cover with time. This has been the ex­pe­ri­ence in Swe­den and the United King­dom.

Ap­ply for in­for­ma­tion

She says she has con­cerns about the new rules that will ap­ply to donor-con­ceived peo­ple who seek their birth cer­tifi­cates when they turn 18. At this point they can ap­ply for in­for­ma­tion about their donor, who has 12 weeks to ob­ject. The new rules pro­vide for the per­son seek­ing a birth cer­tifi­cate to be in­formed of their sta­tus.

Prof Mad­den says for peo­ple who were never told by the par­ents who raised them that they were donor-con­ceived, this could be the first time they learn this in­for­ma­tion.

Some au­thor­i­ties have ques­tioned whether this is an in­fringe­ment of parental rights by the State. Ir­ish law is “very un­usual” by in­ter­na­tional stand- ards, she says. “There is cer­tainly a bal­ance to be struck, but I’m not sure the method cho­sen is the cor­rect one.”

Given the thorny is­sues in­volved and the lack of reg­u­la­tion, it seems in­evitable that cases in­volv­ing the iden­tity rights of donor-con­ceived chil­dren will reach the courts even­tu­ally, as sur­ro­gacy cases al­ready have.

Donor Off­spring Europe, one of the big­gest rep­re­sen­ta­tive groups, says it has no mem­bers in Ire­land, and staff say they do not know any donor-con­ceived peo­ple from this coun­try.

Pro­posed reg­is­ter

The pro­posed reg­is­ter will ap­ply only to chil­dren born af­ter the date of im­ple­men­ta­tion, leav­ing donor- con­ceived peo­ple born be­fore it with no trac­ing rights if the sperm or egg do­na­tion was anony­mous.

How­ever, the in­creas­ing so­phis­ti­ca­tion of DNA test­ing makes it pos­si­ble for peo­ple to con­tact their ge­netic rel­a­tives. The Donor Sib­ling Reg­istry, which is based in the United States, helps peo­ple con­tact ge­netic rel­a­tives. It claims more than 50,000 mem­bers and says it has helped 14,000 half-sib­lings and donors get in touch with each other since 2000.

It claims that with DNA test­ing, Google and so­cial me­dia, anonymity is “a thing of the past”. A map on its web­site in­di­cates that 53 of the peo­ple on its books have Ir­ish ad­dresses.

Such de­vel­op­ments have caused con­cern among some par­ents, wor­ried that their donor-con­ceived chil­dren might dis­cover their ori­gins through an on­line ser­vice.

But, as Prof Mad­den points out, the stigma that might orig­i­nally have at­tached to th­ese births is less­en­ing over time, as so­ci­ety be­comes more open. “The re­sult is that peo­ple are more likely to feel more com­fort­able about telling their chil­dren about their ori­gins.”

It seems in­evitable that cases in­volv­ing the iden­tity rights of donor-con­ceived chil­dren will reach the courts even­tu­ally, as sur­ro­gacy cases al­ready have. PHOTOGRAPH: GETTY

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