http://www.bioedge.org/index.php BioEdge -- the latest news about bioethics en mcook@mercatornet.com Copyright 2009 2009-11-07T12:47:56+10:00 http://feedproxy.google.com/~r/Bioedge/~3/iCFHHFiY9OE/ http://www.bioedge.org/index.php/site/british_mother_asks_court_to_turn_off_her_infants_machine/#When:12:47:56Z Dispute with father"Amicably separated" parents in Britain are at loggerheads over whether to let their disabled 13-month-old son die. RB, as the boy is called to protect the family's privacy, has congenital myasthenia syndrome, a rare neuromuscular condition that prevents him from breathing on his own and severely restricts his power to move his limbs. The British health service has applied to the High Court in London to allow life-saving care to be withdrawn.His doctor, who cannot be named, has described the child as at the “most severe end” of physical disability. He lacks the ability to cough or swallow and must be moved every two hours to prevent pressure sores. The mother believes that her child will be better off dead. But the father contends that he should have a tracheotomy so that he can be cared for at home. Unlike many children with severe developmental disorders, RB may have normal intelligence. The father contends that he can see, hear, feel, and recognise his parents and deserves to live.Although most of the media presented a very dark picture of RB's future, the Daily Mail published an open letter from the mother of a 10-year-old with a similar condition who went on to have a tracheotomy. He goes to school in a wheelchair and is a popular and well-loved child. “Today I look at my gorgeous, funny, cheeky little boy and I am endlessly grateful we gave him a chance to live," writes Niki Shisler. She says that doctors are normally cautious and pessimistic and speculates that they may be too concerned about the cost of care. -- BMJ, Nov 4    end of life issues 2009-11-07T12:47:56+10:00 http://www.bioedge.org/index.php/site/british_mother_asks_court_to_turn_off_her_infants_machine/#When:12:47:56Z http://feedproxy.google.com/~r/Bioedge/~3/JrUcENuhWn4/ http://www.bioedge.org/index.php/site/aborted_foetus_cells_used_to_make_beauty_cream/#When:12:36:56Z Cosmetics company incites ethical debateA San Francisco cosmetics company, Neocutis, has admitted that it used cells from an aborted male foetus as an ingredient in a beauty cream. The Swiss product is manufactured from patented processed skin proteins (PSP), and is used for conditions such as psoriasis and eczema, and, unsurprisingly, ageing. It is controversial because the proteins were obtained from a postage stamp-sized rectangle of skin taken from a terminated 14-week old male foetus in Switzerland.Anti-abortion groups were particularly scandalised by the company’s brazenness in defending the use of aborted tissue in beauty creams. Neocutis contends that harvesting the skin cells was responsible and ethical. “The small skin donation” taken to develop this cosmetic treatment “originated from a single terminated pregnancy that could not survive to term and that was deemed medically necessary by the attending physicians.” The company compared this use of foetal tissue to the 1954 Nobel Prize, which was awarded to “researchers who utilized fetal kidney cells to develop the polio vaccine.”The PSP is used in Neocutis bio-restorative skin cream, Journée bio-restorative day cream, Lumière bio-restorative eye cream and Bio-gel bio-restorative hydrogel. The Neocutis website says that “Through years of research, physicians [have] discovered fetal skin has a unique ability to heal wounds without scarring.”The moral status of foetal material is widely disputed. For some, as an entry in the American Journal of Bioethics Blog suggests, “foetal proteins in a face cream aren't any different from animal or plant protein because for them the moral status of the aborted foetus doesn't have the moral status to give one concern if consent to both abortion and research took place.”On the other hand, the Vatican discussed the use of “biological material of illicit origin” in its recent statement on bioethics, Dignitas Personae. This insisted that “The corpses of human embryos and fetuses, whether they have been deliberately aborted or not, must be respected just as the remains of other human beings.” ~ Washington Times, Nov 3, abortion 2009-11-07T12:36:56+10:00 http://www.bioedge.org/index.php/site/aborted_foetus_cells_used_to_make_beauty_cream/#When:12:36:56Z http://feedproxy.google.com/~r/Bioedge/~3/6nwhWSLRBz0/ http://www.bioedge.org/index.php/site/my_genes_made_me_do_it_says_italian_murderer/#When:12:33:56Z But some scientists are scepticalAn Italian of Algerian descent who stabbed a man to death in 2007 has had his sentence reduced because he has a gene which predisposes him to violence. Abdelmalek Bayout originally received a relatively mild sentence of 9 years and 2 months because he had a psychiatric illness. But his lawyer succeeded in knocking another year off by pointing out that he had gene variants linked to aggression, notably the gene encoding the neurotransmitter-metabolizing enzyme monoamine oxidase A (MAOA). A molecular neuroscientist and a cognitive neuroscientist testified that this would make him more prone to violence when provoked.This is not the first time that MAOA has been invoked as a defence in criminal law. In the last 5 years, it has come up more than 200 times in US trials, according to Nita Farahany, of Vanderbilt University. She specialises in the ethical and legal perspectives on neuroscience and is sceptical of the “my genes made me do it” defence. "The point is that behavioural genetics is not there yet, we cannot explain individual behaviour, only large population statistics," she told Nature News.Genetic determinism is far from being a dogma amongst geneticists. "90% of all murders are committed by people with a Y chromosome -- males. Should we always give males a shorter sentence?" says Steve Jones, of University College London. "I have low MAOA activity but I don't go around attacking people." -- Nature News, Oct 30 genetics 2009-11-07T12:33:56+10:00 http://www.bioedge.org/index.php/site/my_genes_made_me_do_it_says_italian_murderer/#When:12:33:56Z http://feedproxy.google.com/~r/Bioedge/~3/SI6n8XGg4Tw/ http://www.bioedge.org/index.php/site/genetic_tests_used_to_prove_nationality_in_uk/#When:12:30:56Z Protests from scientistsBritish immigration officials want to use genetic tests to determine the nationality of asylum seekers, a move which scientists have criticised as "fundamentally flawed science". "Genes are not aware of national borders," said Sir Alec Jeffreys, a geneticist at the University of Leicester. "Nationality is a legal concept, and it's got nothing to do with genetics at all."And bioethicist John Harris, of Manchester University, commented: "Genetic testing may be able to tell you where somebody's ancestors started out, but it doesn't tell you where they're from. It won't give them anything worth knowing, and it's very likely that what it will give them is misleading."The United Kingdom Border Agency launched a pilot project in September because it feels that many African asylum seekers are claiming that they have come from a dangerous and war-torn country like Somalia or Sudan rather than a relatively peaceful place like Kenya. The refugees are asked to give a voluntary cheek swab or hair or nail sample which the Agency says yields valuable, if not conclusive, evidence about their country of origin. So far the tests are only being used on people who claim to come from Somalia, Ethiopia, Eritrea, Kenya, Uganda and Sudan.According to AP, the agency originally planned to use the tests as definitive proof of nationality, but retreated after scientists protested. Now the agency declares that they will only be used in combination with other ways of determining a refugee's nationality, such as language analysis and interviews. ~ AP, Nov 6 genetics, genetic testing 2009-11-07T12:30:56+10:00 http://www.bioedge.org/index.php/site/genetic_tests_used_to_prove_nationality_in_uk/#When:12:30:56Z http://feedproxy.google.com/~r/Bioedge/~3/L2_SvvRlO4s/ http://www.bioedge.org/index.php/site/british_ivf_clinic_makes_worst_mistake_possible_says_industry_watchdog/#When:12:26:56Z Inadequate screening of donated sperm leads to miscarriageA serious error in a British fertility clinic’s screening processes has led to concerns about the safety of IVF procedures. The London Women’s Clinic (LWC) was found this week to have produced a large quantity of embryos using unscreened sperm. The sperm had a serious chromosomal abnormality which could be passed on to any of the unborn children, the Independent newspaper found. The mistake led to a miscarriage for at least one of the couples to whom these embryos were donated. Twenty-two other embryos resulting from the sperm were destroyed.The incident could spark more investigation into the practices of British IVF clinics and the industry’s current regulatory system. The Human Fertilisation and Embryology Authority (HFEA), the UK’s fertility industry watchdog, has stated that it will name and shame similar errors in future. The LWC’s mistake has been described as the worst possible for a fertility clinic.  Current HFEA figures reveal that there have been 182 “incidents” in British fertility clinics in 2008, eight of them “serious”. But lawyers are sceptical of these figures and say that the actual numbers could be far higher. A number of affected couples are initiating legal proceedings. The LWC was pulled up earlier this year in an HFEA inspection, after the required number of “witnessing stages” crucial to correct screening procedures, was not carried out. However, the clinic was found still producing embryos using unscreened sperm in June, according to some prospective parents.The couple later demanded compensation from the LWC. "It made us so aware that IVF is a business and it all comes down to money," the couple told the Independent. They were eventually remunerated; the LWC sent them abroad for fertility treatment; and they are now expecting a child. ~Independent (UK), Nov 1 assisted reproduction, IVF 2009-11-07T12:26:56+10:00 http://www.bioedge.org/index.php/site/british_ivf_clinic_makes_worst_mistake_possible_says_industry_watchdog/#When:12:26:56Z http://feedproxy.google.com/~r/Bioedge/~3/ucHSkCidLPA/ http://www.bioedge.org/index.php/site/oklahoma_abortion_reporting_law_misrepresented/#When:12:22:56Z Privacy issues continue to spark A new law affecting patient privacy has become the centre of political controversy in Oklahoma. As reported last week in BioEdge, abortion advocates complained that women could easily be identified using the information gained from a new questionnaire. But the state chairman of Oklahomans For Life, Tony Lauinger, says that this misrepresents the new abortion-reporting law.He says that new law actually repeals the existing law’s requirement for identifiable residential information. The legislation reads: “Nothing in the Individual Abortion Form shall contain the name, address, or information specifically identifying any patient.” However, the form is highly comprehensive. Doctors are required to tick about 37 boxes, many of which are comprised of several (in one instance around 40) sub-questions about the patient’s reasons for abortion, number and nature of past abortions, method of payment, as well as the mother’s race, age, marital status and other details. The new legislation also requires information about abortion complications.Lauinger points out that the abortion industry, particularly the Guttmacher Institute (formerly the research arm of the Planned Parenthood Federation of America) already collects and publishes demographic information through annual surveys.Medical privacy is a major concern in the age of the internet. As the amount of publicly available information grows, medical information can be increasingly matched to demographic data. Latanya Sweeney, of Harvard’s Center for Research on Computation and Society, says that “policies on data sharing are not very good, and the result is that data tend to flow around and get linked to other data.” ~ BioEdge, Oct 30 , National Right to Life Committee Oct 21,  Harvard Magazine Sept-Oct 2009 privacy 2009-11-07T12:22:56+10:00 http://www.bioedge.org/index.php/site/oklahoma_abortion_reporting_law_misrepresented/#When:12:22:56Z http://feedproxy.google.com/~r/Bioedge/~3/4dlc7n_DENk/ http://www.bioedge.org/index.php/site/new_suicide_drug_available_next_year_says_nitschke/#When:12:18:56Z Exit International to sell barbiturate in 2010 A “peaceful pill” for people who want to commit suicide will be made available by mail order in 2010. The pill is a stable solid form of the barbiturate Nembutal. Developed by the euthanasia group Exit International, it is designed to withstand transport and can be stored for up to 50 years. Customers will only have to mix it with water. An activation kit with the chemicals for reconstitution and a test kit to check the strength of the resulting product are nearly finished so that the pill can be distributed.Dr Philip Nitschke, a leading right-to-die advocate and director of Exit International, said “Exit believes that all seniors of sound mind should have the option of a peaceful death at the time of their choosing should this be their wish – this Exit Pill will go some way to ensuring this.” Nitschke is set to hold instructional suicide talks in San Francisco this Sunday. ~ Assisted-Suicide Blog Oct 30, CBC News Nov 4 end of life issues, euthanasia 2009-11-07T12:18:56+10:00 http://www.bioedge.org/index.php/site/new_suicide_drug_available_next_year_says_nitschke/#When:12:18:56Z http://feedproxy.google.com/~r/Bioedge/~3/0GNjGlTE_RQ/ http://www.bioedge.org/index.php/site/next_year_says_geron_embryonic_stem_cell_trials_will_begin_we_hope/#When:09:17:56Z Critics jeer onOne of the most convincing advocates of human embryonic stem cell research, quadriplegic actor Christopher Reeves, died without seeing any substantial progress towards a cure for spinal cord injury. However, he was buoyed up by the hope that hESC research at Geron Corporation might help him walk again. Geron has announced many times that it would soon start human hESC trials -- but so far no trials have begun. The latest announcement came last week when it announced that the trials would begin next year. Its share price rose 4.2% at the news.Dr David Prentice, of the Family Research Council, a critic of embryo research, has been logging Geron's announcements since 2002 and found that trials were going to begin "next year" every year since 2004. He argues that "the obsession with embryonic stem cells has obscured the real hope for patients–adult stem cells. Peer-reviewed evidence of adult stem cell success for spinal cord injury patients has already been published by groups in Portugal, in Australia, in Ecuador,and in Brazil". The trials with embryonic cells have usually been delayed over safety concerns, as they could cause tumours. --Forbes, Oct 30 2009-11-07T09:17:56+10:00 http://www.bioedge.org/index.php/site/next_year_says_geron_embryonic_stem_cell_trials_will_begin_we_hope/#When:09:17:56Z http://feedproxy.google.com/~r/Bioedge/~3/yrfhBu_VENU/ http://www.bioedge.org/index.php/site/swiss_to_curb_suicide_clinics/#When:10:57:26Z Bill to be presented in March Swiss suicide clinics are facing a crackdown. Justice Minister Eveline Widmer-Schlumpf says either the clinics will have to accept much tougher regulations or they will be closed down. A bill will come before parliament in March. Under the new regulations, patients would have to present two medical opinions declaring their disease incurable; their death would have to be expected within months; and they have to be of sound mind and fully aware of their options. The federal government would take over regulation of assisted suicide from regional authorities, which is sure to be controversial with the cantons. The new law would also ban any attempt to charge fees for profiting from the deaths. The two main right to die groups, Exit and Dignitas, oppose the proposals and may seek a referendum. They have accused the government of depriving citizens of their right to self-determination and responsibility. Ludwig Minelli, the founder of Dignitas, said that without the clinics, people would  resort to desperate measures. “By cutting off assisted suicide for chronically or psychologically ill people who are capable of informed choice the Government will promote lonely suicides on train tracks.” So many people from other countries have come to die in Switzerland, including more than 100 Britons, that it is being called “suicide tourism”. “At the root of the Swiss Government’s initiative is a fear that the cheerful Heidi-and-cowbells image is being tarnished by suicide tourists,” says the London Times. – London Times, Oct 29; SwissInfo, Oct 28 end of life issues, physician-assisted suicide 2009-10-30T10:57:26+10:00 http://www.bioedge.org/index.php/site/swiss_to_curb_suicide_clinics/#When:10:57:26Z http://feedproxy.google.com/~r/Bioedge/~3/DJQJOr99k5M/ http://www.bioedge.org/index.php/site/medical_researcher_debarment_too_slow_says_us_agency/#When:10:13:26Z US government watchdog calls for faster debarment of offending doctors US medical researchers who are to be debarred have been allowed to practise for up to 11 years after their debarment has been set in motion. In a recent review of the US Food and Drug Administration (FDA) by the Government Accountability Office (GAO), it was found that “more than half of the debarment proceedings in GAO’s review took 4 or more years”. It was also noted that “internal control weaknesses”, such as the lack of a time frame for the process of debarment, led to an extended period where offending doctors could still practise. The FDA monitors clinical research involved with new drugs, biologics (commercial biotechnological products), and has the ability to debar or disqualify doctors engaging in misconduct such as fraud. Other offences include neglecting to report adverse patient responses to clinical trial drugs and the forgery of patient consent documents. However, the FDA’s ability to debar or disqualify does not extend to the irresponsible use and/or proliferation of medical devices, “and its regulations do not extend disqualification for drugs and biologics to medical devices and vice versa.” Republican Representative Joe Barton, of Texas, expressed concern about the FDA’s tardy debarment processes in a press release, saying: “I think it is especially inexcusable that the agency can't seem to quickly and consistently debar even convicted felons”. The GAO acknowledged the Agency’s revisions to debarment processes made over the past year, designed to improve the timeliness of debarment proceedings, but also stated that “the effects of such actions have yet to be seen.” ~ Government Accountability Office Sept 2009, Wall Street Journal Oct 22, 2009 2009-10-30T10:13:26+10:00 http://www.bioedge.org/index.php/site/medical_researcher_debarment_too_slow_says_us_agency/#When:10:13:26Z