Maybe Cloning Would Be Better

Spare Parts Department

The use of fœtuses as organ and tissue donors is a ticking time bomb of bioethics.

- Dr Arthur Caplan

Doctors in London said a 2-year-old boy there with thalassaemia, a rare genetic blood disorder which affects hæmoglobin, would die unless his parents created a test-tube sibling who might save him via a bone-marrow transplant or transfusion. This has been done in the US, but laboratory-created embryos are (as yet) illegal in Britain.

The doctors asked authorities to make an exception, saying any family would understand the dilemma. None of the child's current siblings was a match. His mother could just become pregnant and hope for the best, but the odds are against it. Why not use modern laboratory techniques to virtually ensure success?

The British (understandably) see the decision as a possible "slippery slope" down which reproductive standards could slide. Before you know it, people could be ordering up laboratory-designed babies to provide all manner of parts needed to prevent someone's death. But what about the feelings and health of the newborn baby to be born - in some cases only to undergo immediate surgery?

If a fœtus could be made to be born anencephalic (without hope of a consciousness or continued life), then could vital parts - such as hearts, livers, or lungs then be removed without guilt? In the past, Britain has been concerned only with gender issues (for example, one family wants to ensure they have a girl after their daughter died in a fire).

In the US, doctors screened a number of test tube embryos, selected one that matched, and implanted it so that a teenage girl with a genetic disorder was saved by a transplant from her new baby brother. There is only a 30% chance of success in any case. Should a child be used as a commodity? It already happens to some extent - say when a couple has a child hoping it will patch up a rocky marriage. Should it be sanctioned?

Couple's Fresh Hope after "Designer" Baby Ruling

A couple trying to create a baby to save the life of their two-year-old son are hopeful after a change in IVF rules. The Human Fertilisation and Embryology Authority says couples will be allowed to select test-tube baby embryos whose tissue matches that of a sick sibling. The Leeds couple's 2-year-old boy will die from a rare blood disorder without a perfectly matched bone marrow transplant. Nobody in the family is suitable, so his parents - Raj and Shahana Hashmi from Moortown - have been fighting for permission to design a baby by IVF.

Embryos created by in-vitro fertilisation can already be screened for serious genetic disorders. This process, called pre-implantation genetic diagnosis, is carried out by analysing a cell taken from the embryo about three days after fertilisation. The new ruling allows tissue typing to take place at the same time. The decision permits an embryo to be chosen which will develop into a baby whose umbilical cord blood contains stem cells compatible with a living brother or sister.

Louise Sherman, secretary of Zain's Bone Marrow Foundation, said: "There are strict conditions attached to the HFEA's ruling but it seems clear Raj and Shahana meet all of the criteria. They've got a long way to go but this is very good news."

The couple's son, Zain, who will be three on Boxing Day, suffers from beta thalassaemia major, a terminal disease which means oxygen does not travel through his body properly. He is unlikely to reach his teens without a transplant. His parents want to have another baby whose stem cells from the umbilical cord could be used for a transplant but had been prevented from doing so until the new ruling. The HFEA stresses applications will be considered on a case-by-case basis, and subject to strict conditions.

Source: Ananova Thursday 13 December 2001

Fertility Expert to Set Up Clinic for "Spare-Part" Babies

A fertility expert is building a new laboratory to provide so-called "spare part" babies to families with seriously ill children. Dr Mohammed Taranissi told BBC's Newsnight he wants to set up a clinic in London to create a younger brother or sister genetically selected to be perfect donors. The specialist said he would seek a licence from the Human Fertilisation and Embryology Authority (HFEA) but if they refuse he will still go ahead.

Dr Taranissi, director of the Assisted Reproduction and Gynæcology Centre in London, told Newsnight he was not heading down a moral "slippery slope". He said: "It's not a commodity, as the baby will be loved and cherished on its own merit. It's not just being produced as a spare part."

Dr Taranissi has already referred British woman Denise Kelly and her son Nathan to a team in Chicago who first carried out the process and who are helping him set up a genetic selection lab in Britain. The team saved the life of 3-year-old Molly Nash, an American girl with a rare, fatal genetic disorder called Fanconi's Anæmia, by creating a number of IVF embryos and implanting the compatible ones into her mother. Blood was extracted from the umbilical cord of the resulting baby, Adam, and used to treat Molly, whose bone marrow regenerated and who is now healthy.

Fertility expert Lord Winston said the plans should not be allowed because they prompt the same difficult moral questions as choosing the sex of a child, a practice that remains forbidden. The HFEA is about to announce whether or not it will allow the Molly Nash technique to be used in Britain and its policy manager Peter Mills told Newsnight: "It had never been licensed before in this country but it raises huge ethical issues which vary from case to case."

Source: Ananova Monday 10 December 2001

Concern over "Spare Part" Babies

Children created as so-called "saviour siblings" to aid a sick brother or sister must be monitored to ensure their wellbeing, experts suggest. The recommendation is made in a report on reproductive technologies by the Human Genetics Commission. It warns that once a child has been created to save a sibling, there could be a temptation to view them as a spare parts bank. But the HGC says "designing" clever or sporty children is not on the horizon.

A number of "saviour siblings" have been born, including two-year-old Jamie Whitaker. He is a near-perfect genetic match for his older brother Charlie - now 5 - who has a rare condition called Diamond-Blackfan anæmia, which could only be treated with a stem cell transplant from a matched donor.

The HGC's report, compiled following a national consultation exercise, does not talk about individual family's cases. But it does consider the welfare of a child born as a saviour sibling, as part of its analysis of developments in reproductive technology and genetic testing. It says there is concern over the extent to which that child is used to benefit another person. The report says: "Taking blood from the umbilical cord after birth causes no ill effects, but the removal of bone marrow is more controversial as it causes discomfort, although the long-term risk of harm is slight. However, once it is accepted in principle that children can be created to save the lives of siblings, perhaps more extensive - that is, the donation of a kidney - or repeated tissue donations may be seen as equally permissible." The report suggests it would be difficult to justify preventing parents who have a child with a life-threatening condition from attempting to create a saviour sibling. But it says there have to be safeguards for family relationships and the wellbeing of the child in such circumstances. The HGC said there should be research into the wellbeing of children born in this way.

The report also calls for research to look at the development of children born after pre-implantation genetic diagnosis (PGD) - where embryos are selected if they are free of an inherited condition. But the HGC said it is concerned PGD should not be considered as "purely routine" and called for clear advice so that women understood clearly that they could choose not to have screening. Baroness Helena Kennedy QC, Chair of the HGC, said, "With the accelerating pace of genetic research, the possibilities for couples experiencing fertility problems or families with a history of genetic illnesses are now considerable and increasing. However these new possibilities bring with them new concerns. We have to balance the need to assure reproductive autonomy - the rights of parents to make their own decisions - with the welfare of the child and the wider interests of society."

But Josephine Quintavalle, of the group Comment on Reproductive Ethics, said the potential impact of new technologies - such as those for saviour siblings - should have been thought of before. "These issues are absolutely what we have been worried about. And they should be thought about before children are used as guinea pigs in a social experiment. We can't imagine what it might be like for children born in these circumstances, and what might be expected of them in the future."

Source: news.bbc.co.uk Tuesday, 31 January 2006

Lesbians: We Made Our Baby Deaf on Purpose

by James Langton

New York - A deaf lesbian couple have admitted deliberately creating what are believed to be the world's first designer handicapped babies. The two women tracked down a deaf sperm donor to ensure that their daughter, who is now five, would inherit the same inherited hearing disabilty that they both share. The couple were so pleased with the result that they have just had a second child, called Gauvin, using the same technique. Doctors who examined the boy say he is completely deaf in one ear and has only partial hearing in the other.

In an interview with the Washington Post, the women - Sharon Duchesneau, who gave birth, and Candace McCullough, her lesbian lover - say that they believe deafness is "an identity not a medical affliction that needs to be fixed". They were so desperate to have children who share their handicap that the women asked their local sperm bank to provide a deaf donor, but were told congential hearing loss immediately disqualifies candidates. Instead they turned to a deaf male friend for help, producing what they call their first "perfect baby" - their five-year-old daughter Jehanne. Before their son was born, the women said: "A hearing baby would be a blessing; a deaf baby would be a special blessing."

Both women, who are in their mid 30s, belong to a radical school of thought that believes deafness is a "cultural identity" not a handicap. They want their children to share the same "experiences" including learning, sign language and going to special schools for the deaf. They consulted a "genetic counsellor" before getting pregnant who told them that with Miss Duchesneau's background, that includes four generations of deafness on her mother's side, any child conceived with a deaf sperm donor would have a 50% chance of having the same handicap.

After their daughter's first hearing test, the couple wrote happily in her baby book: "Oct 11, 1996 - no response at 95 decibels - DEAF!'' Their daughter attends a special kindergarten for children with hearing problems. After tests on their baby son showed he also had severe problems, they decided against giving him a deaf aid in the one ear that still has some hearing, saying they will leave the decision to him when he is older.

The couple's behaviour has appalled children's rights groups in the United States. The conservative Family Research Council said their decision to "intentionally give a child a disability" was "incredibly selfish". The council's spokesman, Fred Connor, said: "These women are taking the idea of creating so-called designer babies to a horrible new level." Even a leading member of the American National Association for the Deaf, Nancy Rarus, said she "can't understand why anyone would want to bring a disabled child into the world".

Source: thisislondon.com 8 April 2002 © Associated Newspapers Ltd

One thing Fred Connor, Nancy Rarus and other critics seem not to have considered: Jehanne and Gauvin would not be alive if they were not deaf. If they had other genes, they would also have other consciousnesses - they would be "other" children. This couple didn't "give a child a disability" - what they did was to allowed a child with a disability to be born. Ask the children, once they are old enough to understand, if they'd rather be deaf or to be non-existent. That answer, it seems to me, is the only one which matters. If only genetic "perfects" should be satisfactory to parents, let's make that retroactive - a large portion of the population can be wiped out at once, including most of those self-serving, self-righteous dummies at the so-called "children's rights groups."

Alzheimer's Gene Screened From Newborn

by Rick Weiss

Applying sophisticated genetic tests to batches of human eggs, doctors in Chicago have helped a 30-year-old woman give birth to a baby who is free of her family's curse of early Alzheimer's disease. Doctors said it was the first time genetic screening had been used to cull a form of Alzheimer's from a family line. Some experts praised the feat yesterday as an act of compassion toward the next generation. Without the screening, the newborn would have faced 50-50 odds of becoming hopelessly senile by the time she was 40.

Others criticised the advance as the latest step toward designer babies and called it evidence of a trend toward intolerance of human imperfection. "The path we're on, pretty soon no baby is going to be good enough," said Barbara Katz Rothman, a sociologist at the City University of New York. "It's just increasing the sense of guilt and responsibility on women."

Some also questioned the wisdom of helping establish a pregnancy in a woman whose mind would be so riddled by disease that she would be unable to recognise her own daughter by the end of the decade. But others warned against trying to decide in advance who is fit to have children by assisted reproductive techniques when no such test of parental quality is imposed in this country with regard to conventional reproduction.

The work is the latest of a string of advances in a field known as pre-implantation genetic diagnosis, in which eggs or embryos are tested for disease genes and only embryos lacking such genes are transferred into a woman's womb. Such tests, now available for scores of disease genes, have stirred little controversy when used to detect genes that uniformly cause fatal ailments in childhood. But they have raised ethical issues as doctors used them to cull embryos carrying genes that only modestly elevate a newborn's risk of disease or that do not cause disease until late in life.

Among the many concerns raised by some ethicists is the possibility that parents may select for traits that are not strictly linked to health or disease but rather reflect personal preferences. Some have warned that conventional reproduction will someday be seen as irresponsibly risky, putting pressure on couples to use every test they can afford.

The latest work involved a woman whose family carries a gene variant called V717L. The gene causes a rare form of Alzheimer's disease that leads to severe memory loss and cognitive decline during the fourth decade of life. (No one gene causes - and so no test exists for - the more common form of Alzheimer's, which strikes late in life.)

The woman, whose identity has not been released, had watched helplessly as her 38-year-old sister became incapacitated by the disease and a brother showed evidence of decline at 35. Her father had died at 42, apparently of the same syndrome, and tests had shown that the woman carried the DNA variant - a defect that had 50% odds of being passed to her offspring. Wishing to have children who would never worry about getting the disease, she approached Yury Verlinsky, director of the Reproductive Genetics Institute in Chicago.

Verlinsky used two rounds of hormonal stimulation to retrieve 23 eggs from the woman. He used molecular tests to identify which eggs were free of the genetic mutation, fertilised them with her husband's sperm and transferred four of the resulting embryos to her uterus. One embryo developed into a baby girl, who was born about 17 months ago, according to a report in today's issue of the Journal of the American Medical Association.

In an interview yesterday, Verlinsky said he had no qualms about helping the woman. "If a patient with full conscience fully understands the circumstances, then I would use it for any diagnosable disease," he said. "Prevention is still the best way to do medicine." Verlinsky said the woman was a geneticist and was well educated about the risks, including multiple gestation and misdiagnosis. "It should be up to the patient," he said, adding that doctors can decide for themselves whether to engage in such work. For example, he said, some doctors offer PGD to select a baby's sex, but he is opposed to that use of the technology and does not offer that service.

But others rejected the notion that embryo selection is a decision between patient and doctor. "This is something that affects us all," said Jeffrey P Kahn, director of the University of Minnesota's Center for Bioethics. "It's a social decision. This really speaks to the need for a larger policy discussion, and regulation or some kind of oversight of assisted reproduction."

The American Society for Reproductive Medicine supports pre-implantation genetic diagnosis to prevent disease. But the line between "disease" and "undesirable trait" can be vague. Given the nature of market forces, said Rothman, social and commercial pressures to use the tests are sure to grow. "They're going to ask: 'Do you want to make sure your baby is okay?' and what are you going to say - no?"

Rick Weiss is a Washington Post staff writer

Source: The Washington Post date unknown

Genetic Testing + Abortion = ???

by Amy Harmon

Sarahlynn Lester, 32, considers herself a supporter of abortion rights. She gives money to the National Abortion Rights Action League and volunteers for Planned Parenthood. But as a woman who continued a pregnancy after learning that her child would have Down syndrome, she also has beliefs about the ethics of choosing, or not choosing, certain kinds of children. "I thought it would be morally wrong to have an abortion for a child that had a genetic disability," said Ms Lester, a marketing manager in St Louis.

As prenatal tests make it possible to identify fœtuses that will have mental retardation, deafness, early-onset Alzheimer’s disease and a range of other conditions, such personal deliberations are adding a new layer to the fraught political debate over abortion. Abortion rights supporters - who believe that a woman has the right to make decisions about her own body - have had to grapple with the reality that the right to choose may well be used selectively to abort fœtuses deemed genetically undesirable. And many are finding that, while they support a woman’s right to have an abortion if she does not want to have a baby, they are less comfortable when abortion is used by women who don’t want to have a particular baby.

"How much choice do you really want to give?" asked Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania School of Medicine. "That’s the challenge of prenatal testing to pro-choicers."

For many women and their partners, the decision to terminate a pregnancy after a prenatal diagnosis of a serious genetic defect can be harrowing, often coming after a painful assessment of their own emotional and financial resources. And there is widespread support for such an option: 70% of Americans said they believe that women should be able to obtain a legal abortion if there is a strong chance of a serious defect in the baby, according to a 2006 poll conducted by the National Opinion Research Center. "This issue underscores the importance of families making personal, private decisions without political interference," said Nancy Keenan, president of Naral Pro-Choice America, in a statement. "The decision should be with women, their families, and their doctors."

But as more tests become available for conditions that do not involve serious disabilities, childhood diseases or death in early childhood, the emerging ethical questions may inject more nuance into a perennially polarized discussion. "It will capture where the mainstream of Americans are on prenatal testing and abortion," Dr Caplan added. "Which is, some reasons seem good, and some don’t."

Traditional anti-abortion advocates, from conservative politicians to Pope Benedict, have in recent months criticised the growing use of prenatal testing as a subtle form of eugenics. But the specter of fœtuses being selectively targeted for elimination also has the potential to disturb solid supporters of abortion rights. Some disabilities rights advocates, for example, are pressing the need to reconcile protecting abortion rights with a democratic imperative to embrace human diversity. "If the response is simply, ‘You all are just anti-women’s-right-to-choose,’ I think that misses some of the important disabilities rights issues that are being raised," said Andrew Imparato, president of the American Association of People With Disabilities. Mr Imparato said he was disturbed to learn recently that in several states with legislative efforts to restrict abortion rights, groups like Planned Parenthood often lobby for an exemption for women who learn their child would have a disability. But he said that the person who alerted him was a Planned Parenthood lobbyist who was herself troubled by the tactic because it seemed to run counter to the progressive political agenda that supports both choice and tolerance of human difference.

"You’ve got these two basic liberal values on a kind of collision course," said Rayna Rapp, an anthropologist at New York University who has studied attitudes toward prenatal testing. Ms Rapp argues that it doesn’t need to be that way. One solution, she said, is to make sure the world is a more welcoming place for people with disabilities. Other disabilities rights advocates emphasise the need to educate prospective parents about the positive aspects of raising disabled children. Still, social policy may be unable to sway a seemingly strong personal preference for avoiding children with perceived genetic defects. About 90% of women who learn they are carrying a fœtus with the extra 21st chromosome that causes Down syndrome choose an abortion. Studies have shown that many women choose to abort for diagnoses of less serious conditions. And a growing number of fertile couples are using in vitro fertilisation to gain greater control over the genetic makeup of their children. Under a procedure known as preimplantation genetic diagnosis, doctors screen embryos for a high risk of developing breast cancer or arthritis, and implant only embryos with the desired genetic makeup.

The questions may only become murkier if testing extends to traits like homosexuality or intelligence.

But Kirsten Moore, president of the pro-choice Reproductive Health Technologies Project, said that when members of her staff recently discussed whether to recommend that any prenatal tests be banned, they found it impossible to draw a line - even at sex selection, which almost all found morally repugnant. "We all had our own zones of discomfort but still couldn’t quite bring ourselves to say, ‘Here’s the line, firm and clear’ because that is the core of the pro-choice philosophy," she said. "You can never make that decision for someone else."

The rhetoric of "choice," however, can take on a more troubling resonance when it comes to selecting children with new reproductive technologies, disabilities rights advocates say. "It so buys into this consumer perspective on our children," said Marsha Saxton, a senior researcher at the World Institute on Disability in Oakland, California, who is an abortion rights supporter.

With a new, more conservative Supreme Court, which has just upheld a law banning a procedure critics call partial-birth abortion, disabilities rights advocates say they fear that the reproductive rights movement sees such discussions only as an opening to abortion opponents. "The fear is that this will be used as an excuse to limit women’s access to abortion," said Sujatha Jesudason, associate director of the Center for Genetics and Society, a nonprofit group promoting limits on reproductive technology. "But as these selective technologies are getting popularized we need to try to agree on a set of principles without giving up the fight for reproductive rights."

If that doesn’t happen, some abortion rights supporters say they are worried that their opponents may hijack the discussion. "Some religious conservatives say that they trust God to give them the child that is meant to be," wrote Ann Althouse, a law professor in Madison, Wisconsin, who identifies herself as an abortion rights supporter on her legal blog. "But isn’t there something equivalent for social liberals? Shouldn’t they have moral standards about what reasons are acceptable for an abortion?"

Source: nytimes.com 13 May 2007