FROM THE EDITOR
Today, March 21, is World Down Syndrome Day. Down Syndrome, also called Trisomy-21, occurs when people have a third copy of their 21st chromosome – hence the choice of March 21. In 2011 the United Nations passed a resolution supporting the celebration and declaring grandiloquently that:
People with Down syndrome, on an equal basis with other people, must be able to enjoy full and equal rights, both as children and adults with ‘opportunities’ and ‘choices’.
This is the theme of a series of very touching and entertaining YouTube interviews with Down Syndrome people around the world which were released this week. The organisers of the Day, a British charity called Down Syndrome International, say that people with Down Syndrome are discriminated against and are often denied the right to participate in civic life.
What’s odd about this complaint is that the biggest discrimination is not mentioned at all – the right to participate in life, period. Statistics vary, but an estimated 90% of women who know that they are pregnant with a Down Syndrome Child choose to abort it. Increasingly accurate prenatal testing services will ensure that fewer and fewer Down Syndrome Children enter the world, with the connivance of governments and doctors. In practice, the “choice” which Down Syndrome advocates are supporting is, sadly, the choice that adults make when they disabled children.
The generous and self-sacrificing work of Down Syndrome International must be acknowledged. But a bit of realism is in order, too. Why is it so reluctant to mention that Down Syndrome children are being denied their right to life?Click Here to Comment on this letter
|This week in BioEdge|
Dolce & Gabbana's latest show celebrates maternity
The marquee bioethics story of the week comes from the catwalks of Milan. In an interview in the Italian magazine Panorama, gay luxury fashion designers Stefano Gabbana and Domenico Dolce attacked same-sex marriage, IVF and surrogacy. Twitter and Instagram instantly became incandescent with indignation over a few score of words by the billionaire designers.
Dolce and Gabbana lived as a couple for 20 years, but split up amicably in 2005, although they remain prodigiously successful business partners. When asked if they would like to be fathers, Dolce replied, “I’m gay, I cannot have children.” He added that he feels that “you are born to a mother and a father — or at least that’s how it should be. I call them children of chemistry, synthetic children. Rented uterus, semen chosen from a catalogue.”
That’s not all. Dolce, 57, who has identified as a practicing Catholic, said: “No chemical offspring and rented uterus: life has a natural flow, there are things that should not be changed.” Dolce then added: “You are born to a mother and a father – or at least that’s how it should be. I call children of chemistry, synthetic children. Rented uterus, semen chosen from a catalog.”
Gabbana, 53, added: “The family is not a fad. In it there is a supernatural sense of belonging.” And Dolce chimed in: “Procreation must be an act of love; now even psychiatrists are having to deal with the effects of these experiments.”
The five or six throwaway sentences provoked a nuclear response, first from gay icon Elton John, who is the father of two children of a surrogate mother, and then from other celebrities and the media.
"How dare you refer to my beautiful children as 'synthetic' [said Elton John on Instagram]. And shame on you for wagging your judgemental little fingers at IVF ... Your archaic thinking is out of step with the times, just like your fashions. I shall never wear Dolce and Gabbana ever again. #BoycottDolceGabbana."
The Hollywood director Ryan Murphy tweeted that Dolce & Gabbana’s clothes are “as ugly as their hate.” And so on.
It’s hard to know what lessons to draw from this searching and incisive debate on assisted reproduction, except that the gay community is probably not as monolithic as the media portrays on issues like same-sex marriage, same-sex parenting, surrogacy and IVF. More conservative views, such as the Catholic position that procreation should be reserved for traditional marriage, still have street cred in unlikely places.
Could it be a marketing ploy for two canny businessmen who want to cement their reputation for, surprisingly, a maternity-friendly fashion? Their latest show featured a number of stylishly pregnant models, along with children.
The spat continues.
Is it ethical to Google your patients? A recent article in the Journal of General Internal Medicine examines this question, with Penn State College of Medicine researchers contending that professional medical societies must update or amend their Internet guidelines to address the ethics behind it.
“Many physicians would agree that seeking information about their patients via Google seems to be an invasion of privacy, violating trust between patients and their healthcare providers,” explain the researchers. “However, it may be viewed as ethically valid, and even warranted under certain circumstances.”
The article examines two scenarios in which ‘googling’ a patient is taken to be ethically permissible. One involves contacting patient whose genetic results are reassessed after many years and revealed to contain a deleterious mutation. The other involves a patient whose genetic counsellor suspects is lying about her family history of cancer.
Abstracting from these two fictional scenarios, the researchers suggest a number of general situations in which ‘googling’ one’s patient would be acceptable.
The researchers label the lack of current guidelines the “google blind-spot”, and suggest that medical associations have an ethical imperative to address the issue.
US-based genetic testing company 23andMe intends to use its customers’ data for ground-breaking drug research and development programs.
The company has in the past collaborated with medical researchers and pharmaceutical companies by licensing access to genetic information contained in its database. But last week it revealed it plans to set up its own pharmaceutical wing to identify new drug targets for both common and rare diseases.
Researchers believe mutations and other genetic information in the 23andMe database will reveal potential drug targets for a range of diseases. Healthy carriers of mutated genes may offer insights into why some people do not develop disease.
The announcement comes with the appointment of Richard Scheller, former Genentech vice president of research and early development, as chief scientific officer and who will lead a newly created therapeutic subdivision. Professor Scheller said that ‘human genetics has a very important role to play in finding new treatments for disease’.
"I have dedicated my life to research aimed at fulfilling unmet needs for very sick people. I believe that human genetics has a very important role to play in finding new treatments for disease. I am excited about the potential for what may be possible through 23andMe's database. It is unlike any other."
In response to potential ethical concerns that could arise from using customers' data in this way, 23andMe co-founder Anne Wojcicki insisted that its research consent policy will retain the right to opt-out. Around 80% of 23andMe's 875,000 customers have agreed that it can use their health data for medical research.
Poland’s parliament will shortly debate draft legislation about IVF – a procedure that de facto legal in the country but lacking a clear statutory framework.
The proposed bill, put forward by the ruling Civic Platform party, would allow married and cohabiting couples access to the procedure after 12 months of trying to conceive. The age limit is likely to be capped at 35 for women.
The bill would also ban sales and destruction of human embryos, cloning of human embryos and manipulation of human DNA.
Polish Prime Minister Ewa Kopacz said she was concerned about inadequate legal structures regulating IVF. “The current lack of a legal framework for IVF is morally ambiguous and, from a medical standpoint, potentially dangerous”.
The proposed legislation comes in the wake of a Polish hospital IVF mix-up that led to one woman giving birth to the child of another female patient.
Conservative politicians in the Civic Platform party are likely to oppose the bill, as are many politicians from the opposition Law and Justice party.
1,433 children have been born from IVF in Poland since the procedure was made available 25 years ago.
At least 50 patients are euthanased each year for purely psychiatric reasons, says the leading figure in Belgian euthanasia, Dr Wim Distelmans. In an interview in the Belgian magazine Humo, he says:
Manic-depressive patients, in their manic moments, are capable of doing the most improbable things: plundering their bank accounts, staying for weeks in five-star hotels, buying several cars in a single day. At that stage they are not mentally competent, obviously. But in moments of depression, exhausted … they are certainly competent. Then they can say, for example: "I have lived through crazy highs and lows for 30 years; I've tried everything to break that infernal cycle, including psychiatric hospitals, but now I'm back on the baseline, and I know I have a few weeks left before I'm sinking into the depths or rising to heights.”
These are people who are eligible for euthanasia.
This is a small group - 50 to 60 patients - but it is not negligible number: 2 to 3 percent of the 1,924 people who were euthanased last year. Usually they are not old, but they have suffered for a long time. They feel that they are no longer comfortable in this world: "All my relationships have failed." They are in their 20s or 30s; they have been followed medically since they were children; they have a history of institutionalization. Their parents were originally radically against euthanasia, but eventually they agreed with it because nothing more could be done…
We insist that the euthanasia occurs in the presence of the family. That is comfortable for the patient, and it makes it easier for the family later on. They know it was what the patient wanted.
But a lot of psychiatric patients come from dysfunctional families and veto the presence of certain family members because "They are the cause of my misery." You should respect that.
Dr Distelmans feels that euthanasia (Levensbeëindiging Op VErzoek) is a form of love, as this stylized photo from the Belgian media shows: a silhouette of Distelmans's familiar profile, with the Dutch word forming the English word "love".
Almost one in 20 people in northern Belgium died using euthanasia in 2013, more than doubling the numbers in six years, a study released Tuesday showed.
The study, published in the New England Journal of Medicine, drew upon the records of nearly 4000 doctors in Belgium’s Flanders region.
While a 2007 survey showed only 1.9 percent of deaths from euthanasia in the region, the figure was 4.6 percent in 2013.
Those requesting euthanasia are mainly highly educated and between 65 and 79, the study found. Terminally-ill cancer patients form the biggest group, although cases in all categories are rising.
“This finding indicates that, after 11 years of experience, euthanasia is increasingly considered as a valid option at the end of life in Belgium”, the authors of the paper concluded.
“Euthanasia has been increasingly accepted by the patients as a valid option at the end of their life. They are increasingly asking for it,” said Ghent University ethics professor Freddy Mortier. “Physicians themselves are more inclined to comply with the wishes of the patients.”
The New York Times is edging to a cautious endorsement of euthanasia and assisted suicide. In an editorial this week, it highlighted the case of Diana Rehm, a well-known personality from National Public Radio, whose husband, who suffered from Parkinson’s disease, chose to starve himself to death after reaching the end of his tether.
Maryland, where he died, is a state which does not allow assisted suicide. “For him to go out that way, not being able to do anything for himself, was an insufferable indignity,” Ms Rehm said in an interview.
Oddly, the editorial did not point readers towards action. It echoes the arguments of Compassion & Choices, the leading American assisted suicide lobby group, and averts to both the Catholic Church’s opposition and the problematic example of the late Jack Kevorkian, who killed at least 130 of his patients.
But it failed to get down to the nitty-gritty of all euthanasia legislation: is it safe? The American mugwump, with his mug on one side of the fence and his wump on the other, is alive and well.
A dispatch from the Let’s-Hope-This-Doesn’t-Happen-Too-Often Department. Australian health authorities are investigating an Italian man who practiced as a gynaecologist and IVF expert in Melbourne for more than a decade. He had offices in posh suburbs and advertised his better-than-average pregnancy rates.
Unfortunately Raffaele Di Paolo was only a Mr and not a Dr who appears to have attracted patients by adding a dash of homeopathic medicine to his treatment. He claimed to be a member of the “European Society Human Reproduction Endocrinology” which sounds like, but is not, the European Society of Human Reproduction and Embryology.
One of his duped clients told the Sydney Morning Herald that Di Paolo told her that he had turned to homeopathy because conventional fertility clinics were "money hungry IVF factories that herd women like cattle". Over two years she spent A$30,000 on his services, some of which were extremely bizarre. The paperwork and invoicing was shoddy and unprofessional. But when she voiced her concerns, he simply said, “Don't you worry Princess, it's all taken care of'."
Mr Di Paolo will appear in court later his month.