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okarol
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« on: April 01, 2012, 04:40:47 PM »

So who's the daddy? Ethics dilemma over sperm donor boom
Transparency about a child's origins is encouraged, but not enforced

JEREMY LAURANCE    MONDAY 02 APRIL 2012

Children of sperm donors 'should be told'

The gift of life is not immune to pecuniary incentives. Charities working with sperm and egg donors report a boom in enquiries from potential volunteers as new regulations allow fertility clinics to make more generous payments.

From today, men will be able to collect £35 per visit for their sperm, up from £15, and women will be paid £750 for their eggs, a threefold rise on the previous amount of £250.

The new rates, agreed by the Human Fertilisation and Embryology Authority (HFEA) following a public consultation last year, are intended to boost the number of donors to meet rising demand. But they have also focused attention on the question of transparency in donation after decades in which the biological origins of tens of thousands of children have been kept secret.

Donor anonymity was removed in 2005 and children born from gametes (sperm and eggs) used since that date will have the right to learn the identity of their biological parent when they reach the age of 18.

But they can only do so if the parents who brought them up tell them about their origins. A survey conducted prior to the law change found 28 per cent of children conceived from donor sperm and 40 per cent conceived from donor eggs had been told by the age of seven.

An inquiry by the Nuffield Council for Bioethics is to examine why parents choose not to tell their children and whether the information is so important, for medical as well as psychological reasons, that doctors and social workers should be involved.

Between 1,500 and 2,000 children are born from donated gametes each year. In the 1970s and 1980s, doctors advised couples receiving treatment that there was no need to tell.

Today openness is encouraged, but it is not enforced.

The devastating impact secrecy can have is illustrated by the case of Rachel Pepa, 29, who was donor conceived and now lives with her partner, Will, and three-year-old son, Gabriel and works as a nurse in Leicester. Her father – the man who brought her up – suffered kidney failure when she was 20 and has been on dialysis since. He suffers from an inherited condition and doctors advised Ms Pepa she had a 50 per cent risk of developing the same disease and should be tested.

"My parents kept saying there was no need to worry. I thought it was odd and I asked my mum, 'Is he not my dad? But she just said, 'don't be silly'."

When Ms Pepa got pregnant at 25 she discovered her blood group was O and knew that was not compatible with her father, who was AB.

"I felt sick to my stomach. My first thought was: did my mother have an affair? Did my dad know?"

It emerged that doctors at the private clinic in London where her parents were treated in the early 1980s had advised them they did not need to tell.

When her father fell ill, her mother had wanted to tell but her father had said no, triggering a "blazing row".

Despite reservations, her mother kept the family secret.

Ms Pepa said: " I absolutely, categorically think I should have been told as a child – as soon as I was old enough to process the information. It is such a fundamental piece of information to have about yourself – to know who your parents are. Sometimes I get angry thinking about it."

Marilyn Crawshaw, national adviser to UK Donor Link – a voluntary register set up to help donors, the donor conceived and their half siblings to get in touch, which has just lost its government funding – said the effect on families when children discover the truth accidentally, as a result of a medical test, or when a parent dies, could be severe.

"There are big issues around medical treatment. We have had some very sad cases of people opting not to have children because they believed they had inherited a genetic disease such as Huntington's, only to discover their biological parents were not who they thought they were."

Communication between donors and their offspring over medical matters was often poor.

"I know of cases where a donor has developed a genetic condition and not passed the details on to the HFEA. And there are cases where a child has developed an inherited condition and the parents have not thought to pass the details back so the donor could be informed," she said.

However, the secrecy typical in the past is disappearing. But many parents needed help to disclose the truth.

"It is best to start practising before the child can speak so you can work out a way of doing it, starting with a little bit and slowly building the story. It's risky to leave it till later because it might come out accidentally, in a family argument, or after a bereavement, and then the aftermath is difficult for everybody."

Dr Rhona Knight, a GP and chair of the Nuffield Council inquiry, said: "We are interested in finding out why, and in hearing people's views on the responsibilities of families with regard to telling, as well as what kind of support they might need."

A daughter' story: 'Mum said she had something to tell me...'

In August 2009 Jess Pearce, then aged 28, discovered the truth about her parentage. "My mum sat me down one afternoon and said she had got something to tell me. I thought she was going to die. When she said "Your dad is not your real dad" , I breathed a sigh of relief."

It was the 1970s when Jackie Pearce, Jess's mother, met her dad. He already had two children by a previous marriage and had a vasectomy. Subsequently he had a vasectomy reversal and soon after Jackie got pregnant with Jess. What the couple did not reveal, however, was that the the operation had failed. Jess had been conceived with the help of a sperm donor. "I was born in 1980 and the clinic where they were treated advised them not to tell because there was no reason for anyone to know. Not even my grandparents knew," said Jess

She was tall and dark like her father – the sperm donor was a good match – and she grew up thinking he was her father.

Jess, now aged 31 and performance manager at the Royal College of Music in London, said: "I know a lot of people feel angry because they have been lied to. I don't feel that.

"My parents took the advice they were given at the time in the same way as they followed the medical advice. They gave me the best life they could."

She is looking for her donor as "I am curious about where I came from".

A donor's story: 'I'm a sperm donor and I don't want anonymity'

Mark Jackson, 44, has donated sperm twice – once in 2005, when anonymity for donors was removed, and again last year. In a decade or two, he could find one of his genetic offspring knocking on his door.

"I wasn't bothered about anonymity," he said. "I wouldn't mind being contacted. There is a difference [between a biological and social father]. You feel more affinity to the father who brings you up."

It was the 2004 Asian tsumani that prompted him to donate.

"I was reading about it and thinking there is nothing you can do in life that makes a difference. Then I saw the Government was ending anonymity for sperm donors and I thought maybe there is something I can do."

He believes children should be told about their origin, but is not in favour of putting the information on birth certificates.

"Germany did that in the 1930s – you shouldn't do anything that could lead to people being stigmatised," he said. "But it's wrong to keep the information from people. I knew someone who found out in his 40s that the person he thought was his dad wasn't. He was devastated."

Is he worried that in the future he might be contacted by a genetic son or daughter who had fallen on hard times and needed help?

"I'm a Yorkshireman," he said. "They won't get much money out of me."

Children should know where they came from.

http://www.independent.co.uk/life-style/health-and-families/health-news/so-whos-the-daddy-ethics-dilemma-over-sperm-donor-boom-7606835.html
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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