The UK’s Supreme Court has ruled that court orders are not necessarily needed before withdrawing hydration and nutrition from a comatose patient. Lady Black, a Supreme Court justice, said: “If the provisions of the Mental Capacity Act 2005 are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient (by doctors and the patient’s family), the patient may be treated in accordance with that agreement without application to the court.” The judgement was criticized by Dr Peter Saunders of the Christian Medical Fellowship. “Once we accept that death by dehydration is in some brain-damaged people’s ‘best interests’ we are on a very slippery slope indeed. There is a clear difference between turning off a ventilator on a brain-dead patient and removing clinically assisted nutrition and hydration (CANH) from a brain-damaged patient. In the first case the patient dies from their underlying brain injury. In the second they die from dehydration and starvation. Taking these decisions away from the Court of Protection removes an important layer of legislative scrutiny and accountability and effectively weakens the law. It will make it more likely that severely brain-damaged patients will be starved or dehydrated to death in their supposed ‘best interests’ and that these decisions will be more influenced by those who have ideological or financial vested interests in this course of action.”
The administration’s use of DNA testing to match migrant children separated from their parents is justifiable as a last resort, medical experts say, but raises a host of ethical problems. U.S. District Judge Dana Sabraw in San Diego said the practice should be curtailed and that DNA testing should be limited to cases in which the parent-child relationship can’t be established through documents, casting aside the government’s position that all parents and children should be tested. Samples should be destroyed in seven days and not used for any other purpose. Officials said testing on 102 migrant children under 5 years old revealed five cases in which adults claiming to be the parent were not.
After a two-year review the Nuffield Council on Bioethics has said that human gene editing to produce designer babies, whether to avoid inherited disease or enhance other characteristics, would be morally permissible if it met two overarching principles. The interventions “must be intended to secure, and be consistent with, the welfare of the future person, and they should not increase disadvantage, discrimination or division in society”. Joyce Harper, professor of genetics and embryology at University College London, said it was impossible to predict when human genome editing might be applied on a wider scale. “We can’t say whether this will be a viable technology in two years or 20 years,” she said. “But we have to start these discussions now when the research is going on.”
CRISPR technology has already been used in biomedicine to study disease etiology and progression with the hope of one day assisting with the prevention and treatment of conditions from cystic fibrosis and hemophilia to HIV and cancer. Ironically, two new papers have been released that suggest that cells that have been successfully edited using CRISPR may have a higher likelihood of triggering cancer. Two papers published in Nature Medicine by researchers from the Karolinska Institute in Sweden and the Novartis Institutes for Biomedical Research in Massachusetts indicate that some methods of CRISPR editing are dependent on the dysfunction of a gene known as p53, a gene that helps cells to repair (or, alternatively, self-destruct) when their DNA has been damaged. The issue is that p53 mutations are responsible for nearly half of ovarian cancers; 43 percent of colorectal cancers; 38 percent of lung cancers; nearly one-third of pancreatic, stomach, and liver cancers; and one-quarter of breast cancers, among others. The CEO of CRISPR Therapeutics, Sam Kulkarni said that the research was “plausible” and alarming: “it’s something we need to pay attention to, especially as CRISPR expands to more diseases. We need to do the work and make sure edited cells returned to patients don’t become cancerous.” Importantly, even if the research findings are confirmed, the problem does not affect every form of CRISPR gene editing, but only one particular method. Yet this method, known as gene correction, is used widely for research into glycogen storage disease, cystic fibrosis, and severe combined immunodeficiency. It also seems to imperil CRISPR research involving pluripotent stem-cells, for the Novartis paper seems to indicate that p53 disruption is necessary for the editing of pluripotent stem cells.
50 years ago, an ad hoc Harvard Medical School committee declared that patients in an “irreversible coma” were dead from a legal and ethical point of view. Yet now the brain death criterion is under intense criticism, with several high profile legal cases in the US calling into question the claim that brain dead patients are really dead. In two recent JAMA articles (one co-authored with lawyer Thaddeus Pope and psychiatrist David S. Jones) Harvard Medical School’s Robert Truog evaluates the brain death criterion, arguing that, while the rationale behind the brain death criterion is defensible, it nevertheless lacks philosophical justification. The law needs black and white distinctions and brain death provides one such distinction. Yet “attempts to find a conceptual justification for linking this diagnosis (i.e., brain death) to the death of the patient remain incomplete”. He recounts how neurologist Alan Shewmon has shown that virtually every function undertaken by a healthy living body can be carried by a brain dead person on a ventilator. He also questions the 2008 attempt by the President’s Council for Bioethics to define death in terms of the absence of the “fundamental vital work of a living organism”.
In April 2018 California police arrested a suspect believed to be the ‘Golden State Killer’ responsible for at least 12 murders and 50 rapes between1976 and 1986. Police uploaded a DNA sample from one of the crime scenes to an online gene-matching service, GEDMatch, and found it matched with family members of a man named Joseph James DeAngelo, a former California police officer. Now 72 year old DeAngelo has been charged with 12 counts of murder. An editorial in Nature considered some of the complexities of the matter: …. this [case] raises the question of how much control people have over information they give to public or commercial databases. DeAngelo’s relatives submitted their DNA for the specific purpose of genealogy then saw it used for something else without their consent. But they should have been told that this is a possibility and given the choice to opt out. Three bioethicists argued in The Hastings Center bioethics forum: The methods used to catch the suspect were clever, scientifically sound, and done with laudable intent: to protect the public from a man thought to be responsible for a dozen murders and at least 45 rapes. But the process used to match the DNA sample of the unknown suspect with his relatives took unfair advantage of people who had submitted DNA samples for a very different purpose. In doing so, it called into question the privacy of DNA data being collected for a wide range of purposes.
Bioethicist Udo Schuklenk has criticized the politicization of the recent high profile legal battle involving British toddler Alfie Evans who died from a mysterious neurodegenerative disease in the Journal Bioethics. Schuklenk is particularly critical of a member of Italy’s National Bioethics Committee, biochemistry professor Assuntina Morresi, who allegedly compared the treatment of Alfie Evans to the treatment of prisoners in a Nazi concentration camp.” What is unacceptable for anyone who wishes to engage in these debates is to abuse such catastrophically ill children for their own ideological conquests and culture wars. Nothing of what happened in Britain (and other countries like it) has anything at all to do with what happened in Nazi Germany.” “Politicians, leaders of global religious organizations and academics ideologically aligned with the latter have reason to reflect on the morality of their own actions”. Rather than criticizing the societal response to the Alfie Evans case, much of the commentary following Evans’s death has called for major law reform in the UK.
The cases of Alfie Evans and Charlie Gard rang bells around the world, not just in England. From Italy comes a proposal for a Charter of Rights for Incurable Children, which will be promoted in the European Parliament and hospitals around the world. The sponsor is Bambino Gesù Children’s Hospital, in Rome, which is linked to the Vatican. The ten articles of the document include: The child and his family are entitled to the best possible relationship with doctors and health personnel, the right to health education, to obtain a second opinion, to receive the most competent diagnosis, to psychological and spiritual accompaniment and to participate in care, research and reception activities. The child has the right to access the best experimental treatment, to cross-border health transfers, to continuity of care and palliative care and the right to respect of their person, even in the final phase of life, without therapeutic obstinacy.
Singapore could become the second country after the UK to legalize three-parent babies using mitochondrial replacement therapy (MRT). The technique for giving birth to children who would otherwise have a genetic disease was legalised in 2016 in Britain after a long and intense debate. “Our position is to keep a close watch on what happens in the UK, to track the UK experience and to learn from what they have done,” geneticist Oi Lian Kon for the Singapore government’s Bioethics Advisory Committee told Science magazine. According to Science, “No other countries have adopted laws specifically about MRT. Many have a blanket ban on changing the human germline that includes the technique whereas Italy and Israel permit it under certain conditions.”
A baby has been born In the Ukraine using mitochondrial replacement therapy (MRT) after the mother was treated, three more are pregnant, and several others are undergoing treatment. Director, Valery Zukin at Nadiya (hope) Clinic in Kiev was not flustered when quizzed by a USA National Public Radio journalist about the ethical issues. "As a doctor I understand only one thing: We have parents who couldn't have children and now they have their own biological child. That's all," he said. However, MRT is currently illegal in the US – a wise move, according to Marcy Darnovsky, of the Center for Genetics and Society, in California. "What we're seeing is a fast slide down a very slippery slope toward designer babies." "We could see parents feeling eager to give their children traits like greater strength, needs less sleep. Some people are saying that, 'Yes, there are genes for IQ and we could have smarter babies’".
AI in healthcare is developing rapidly, with many applications currently in use or development worldwide. The Nuffield Council on Bioethics examines the applications of AI in health care in the briefing note, ‘Artificial Intelligence (AI) in healthcare and research’. A number of AI applications are already in use such as: The early detection of infectious disease outbreaks and sources of epidemics, robotic tools controlled by AI to carry out specific tasks in keyhole surgery like tying knots to close wounds and analyzing speech patterns to predict psychotic episodes and identify and monitor symptoms of neurological conditions such as Parkinson’s disease. But there are some important questions to consider: Who is responsible for the decisions made by AI systems? Will increasing use of AI lead to a loss of human contact in care? What happens if AI systems are hacked? The briefing note outlines some of the key ethical issues that need to be considered if the benefits of AI technology are to be realized and public trust maintained. The challenge, says the Nuffield Council, will be to ensure that innovation in AI is developed and used in ways that are transparent, that address societal needs, and that are consistent with public values.
Alan Traywick who gained worldwide notoriety after injecting himself with a highly experimental herpes treatment in front of an aghast audience at a biohacking conference in Austin, Texas has died from a suspected drowning after a Ketamine overdose. This has intensified the debate over whether biohacking -- body modification and augmentation with the aim of gaining enhanced abilities – should be subject to strict regulation. Other biohacking stunts have included DIY biologists injecting themselves with CRISPR and with experimental HIV treatments. Harvard biologist George Church says that synthetic biologists should be closely monitored: “Anyone who does synthetic biology should be under surveillance and anyone who does it without a license should be suspect.” But University of Queensland biologist Kostas Vavitsas said, “I don’t think that biohackers need a license; they need to be encouraged and allowed to cultivate transparency and a sense of responsibility within their communities. And so far they are doing a great job”.
A group of medical researchers has proposed a clinical trial in American prisons to test whether too much salt is bad for you. In an editorial in Hypertension researchers argue that a randomized clinical trial in a controlled environment is needed to settle the matter once and for all. The military, nursing homes and retirement communities were suggested and discarded. But prisons seem almost ideal. The ethics of clinical trials on prisoners is a fraught area, with many abuses in the past. “Consent means something very different in the prison environment,” Marc Morjé Howard, director of the Prisons and Justice Initiative at Georgetown said. Prisoners who participate so they can get access to health care or to stay on the right side of prison authorities may not be choosing freely. “It’s hard to overstate the importance of food in prisons,” says Keramet Reiter, a criminologist at the University of California at Irvine. Food is a major ingredient of happiness in prisons. It even serves as currency. Changing to a bland, low-salt diet could lead to major disruption.
In the domain of vital organ procurement, there is significant disagreement about the criteria to assess when someone has died. The standard has been “brain death”, according to which a patient can be pronounced dead once “whole brain death” has occurred – the comprehensive and irreversible cessation of brain function. Yet transplant surgeons have in recent years employed a more ethically contentious definition of death, called “circulatory criterion for death”, which refers to the permanent cessation of cardiopulmonary function, after which point brain tissue quickly begins to deteriorate. According to proponents of the circulatory criterion, a patient’s heart will never spontaneously restart after 2 or so minutes of pulselessness. As such, it is seen as ethically permissible to begin organ procurement once this short time period has elapsed. Yet critics point out that CPR could still restart a person’s heart even when autoresuscitation has become impossible. The most recent criticism came from Kennedy Institute for Ethics bioethicist Robert Veatch, who wrote an extended blog post on the topic this week. Veatch states: If one opts for requiring physiological irreversibility, death should be pronounced whenever it is physiologically impossible to restore brain function.
Trenton Mckinley from Alabama was in a comatose state after suffering severe head injuries when hit on the head by a flipped trailer. He had several craniotomy surgeries and suffered kidney failure and cardiac arrest. Doctors believed he would “never be normal again” and talked to the family about donating five of Trenton’s organs that suited five other children and the family agreed to donate. But just a day before he was to have his life-support turned off he began to regain consciousness. He is still recovering gross motor skills and will need several operations to repair his fractured skill. Trenton is now able to communicate without trouble and has even been making jokes with reporters.
Terminally ill British toddler Alfie Evans has died just a little under one week after having life support withdrawn. The protracted legal dispute over the boy's fate reached its climax with protesters attempting to storm Alder Hey Children’s Hospital in a bid to have the boy released. Evans was suffering from an unidentified neurodegenerative disease and specialists from Alder Hey Hospital said that “almost the entirety of Alfie’s brain has been eroded, leaving only water and cerebral spinal fluid”. Vox News journalist Tara Isabella Burton summarized the debate as a disagreement about whether parents or the state should decide what is in the best interests of a child: Ultimately, however, the Evans case is about who gets to decide what the best interest of a child really is. When the view of the state and the view of a child’s parents are at odds, who gets to have the final say? The answer ties into wider questions about medical ethics and what it means for a life to be “not worth living,” and about popular trust, or lack thereof, in the UK’s National Health Service, a paradigmatic example of both the pros and cons of socialized medicine.
In a speech that garnered both criticism and praise, French President Emmanuel Macron told a gathering of Catholic bishops they should not be afraid to contribute to public debate, saying that Christians bring a valuable perspective on the human person to otherwise secular political discussions. Macron said that “Our contemporaries need, whether they believe or do not believe, to hear from another perspective on man than the material perspective...They need to quench another thirst, which is a thirst for absolute. Macron praised the Church for its consistent defense of the vulnerable in society, ranging from the unborn and the elderly to migrants and the poor. “You consider that our duty is to protect life, especially when this life is defenseless. The speech appears to be an invitation for the Church to express its opposition to impending bioethics legislation due to be introduced in the French parliament by the end of the year. The legislation will seek to make single women and lesbian couples eligible for assisted reproduction, which currently is only available to infertile heterosexual couples in France. It would also reconsider legalizing euthanasia, which is now banned.
Through CRISPR gene editing scientist can literally change the nature of any cell and genetically alter every life form. Yet we are not having a meaningful discussion about whether and how to regulate what I believe to be the most powerful technology ever invented says Bioethicist Wesley Smith. In the journal Nature, authors Sheila Jasanoff, professor of science and technology at Harvard Kennedy School, and J. Benjamin Hurlbut associate professor of biology and society at Arizona State University, argue it is time for a “global observatory,” which is essentially an international heart-to-heart discussion. In current bioethical debates there is a tendency to fall back on the framings of those who are at the frontiers of research. But free enquiry, the lifeblood of science, does not mean untrammeled freedom to do anything. As the dark histories of eugenics and abusive research on human subjects remind us, it is at our peril that we leave the human future to be adjudicated in biotechnology’s own “ecclesiastical courts”. It is time to invite in voices and concerns that are currently inaudible to those in centers of biological innovation and to draw on the full richness of humanity’s moral imagination. An international, interdisciplinary observatory would be an important step in this direction.
A new article in Bioethics criticizes policies in neonatal care units that mandate the withholding of treatment from babies born before 25 weeks gestation. Neonatologist Manya Hendriks (University Hospital Zurich) and pediatrician John Lantos (Children’s Mercy Hospital) argue that many extremely premature babies born between 22 weeks and 25 gestation can survive and develop healthily if given adequate treatment. Yet many neonatal intensive care units in Europe and North America routinely withhold treatment based on the fact that they were born before 25 weeks gestation. In evaluating current neonatal care policies the authors write that neonates are sometimes seen as “conditional persons” with less of a claim on our health care resources than fully-developed adult human beings. The authors assert that newborns, even those born prematurely, are full-fledged members of the human community and have the same right to treatment as other humans. This entails giving extreme preterm babies the best possible chance to life. Policies and practices that limit treatment based on gestational age alone violate this basic principle of justice.
Whole genome sequencing is starting to be used in the UK’s National Health Service in the care of seriously ill babies, and will also become available through commercial companies. This raises important questions about what kind of genetic information should be shared with parents, how parents can be supported to make informed choices, and how genomic information should be stored and accessed by others, such as researchers. Within the medical genetics community, using whole genome sequencing to look opportunistically for a broad range of conditions and traits in babies who are not ill is widely thought to be unacceptable. Researchers generally agree that direct-to-consumer genetic tests for children should normally be deferred until they are adults. There are also broader questions about whether increased uptake of whole genome sequencing will change views about genetic variation and disability in society. Professor Dave Archard, Chair of the Nuffield Council on Bioethics says: "Genome sequencing technology has moved at an incredible pace, and we are starting to see the benefits that it can offer to patients with genetic disease. But we need to think carefully about how we handle the sensitive information that can be revealed. Babies do not get a say in this, making it especially important that they, and others, are not disadvantaged in their future lives by a decision taken at birth. We need to make sure there are opportunities for public consideration of the challenges."
India's Supreme Court has handed down a landmark ruling authorizing the use of “living wills” and streamlining the process for the withdrawal of treatment from dying patients. The ruling allows adults to write an advance directive indicating that they do not wish to receive life support if in a comatose or permanent vegetative state. The five-judge panel also outlined a process by which doctors and family members could apply through the courts to have life support withdrawn from a terminally ill and incapacitated patient. The ruling comes three years after the death of Aruna Shanbaug, an Indian nurse who had been in hospital in a persistent vegetative state for over four decades, after being raped and strangled in 1973. Shanbaug was at the centre of a nationwide debate over the ethics and legality of the withdrawal of treatment. “This is an important, historic decision, which clears the air,” said Supreme Court lawyer Prashant Bhushan. “Everybody will breathe a sigh of relief, because people were earlier apprehensive that if they withdrew life support, they could be prosecuted for culpable homicide,” he added.
Artificial intelligence (AI) is being embraced by hospitals and other healthcare organizations that use the technology to do everything from interpreting CT scans to predicting which patients are most likely to suffer debilitating falls while being treated. Electronic medical records are scoured and run through algorithms designed to help doctors pick the best cancer treatments based on the mutations in patients’ tumors, or predict their likelihood to respond well to a treatment regimen based on past experiences of similar patients. But a group of Stanford University physicians contend that AI raises ethical challenges that healthcare leaders must anticipate and deal with before they embrace this technology. “Remaining ignorant about the construction of machine-learning systems or allowing them to be constructed as black boxes could lead to ethically problematic outcomes,” they wrote in an editorial published this week in the New England Journal of Medicine. One reason that AI concerns the physicians is that biases could inadvertently be introduced into algorithms. "What if the algorithm is designed around the goal of saving money?” asks senior author David Magnus, director of the Stanford Center for Biomedical Ethics, in a statement. “What if different treatment decisions about patients are made depending on insurance status or their ability to pay?" They urge other healthcare leaders to adopt a similar system of checks and balances when designing and implementing AI. If they don’t “…the electronic collective memory may take on an authority that was perhaps never intended. Clinicians may turn to machine learning for diagnosis and advice about treatments—not simply as a support tool,” they warned in the NEJM article. “If that happens, machine-learning tools will become important actors in the therapeutic relationship and will need to be bound by the core ethical principles, such as beneficence and respect for patients that have guided clinicians.”
Several former members of the Dallas Cowboys had received experimental stem-cell therapy in Mexico to deal with pain and injuries. Bob Lilly, once a top defensive lineman, said he had received two separate treatments offered by Texas stem cell company Celltex. “I have no pain,” Lilly said. “And that's pretty unusual when you've played 24 years of football”. Several of Celltex’s treatments are yet to be approved by the FDA, and in many cases the company flies clients to Mexico to receive stem cell injections. Bur neurologist Michael De Georgia of Cleveland Medical Centre cautions: “we need to be very cautious about claims and promises to patients who may be under the assumption or the belief that this therapy has been shown to be effective, and it hasn't”.
The Dutch parliament has narrowly passed a bill that requires every person over 18 to notify government officials if they do not want to be an organ donor. The law is intended to reduce pressure on next-of-kin, who are often required to make decisions about organ donation on behalf of the deceased. Critics have complained that it puts too much authority in the hands of the government over what happens to a citizen after their death. Bioethicist Wesley J Smith suggested that in some cases euthanasia “without request or consent” could be combined with presumed consent for organ donation: “a patient could very conceivably be both killed and harvested without having requested it”.
Biohacking, or do-it-yourself biology, attempts to take what have traditionally been university or institute-based scientific disciplines – molecular biology, genetics, bioengineering, and so forth – and make them more available to the general public. Several grass-roots biohacking organisations have surfaced in recent years, including biophysicist Josiah Zayner’s company The Odin. Zayner aims to make experimental biotechnologies available to the public – particularly equipment for genetic engineering. “One of my big problems with academic and medical science is [that] lots of stuff...won’t be available to the general public for 10, 20, 30, 40 years...How do you expect this technology go forward if they aren’t testing, playing around it? What is too early and what is too late? I don’t know if there’s an answer. The US Food and Drug Administration recently issued a harshly worded statement cautioning consumers against DIY gene-therapy kits and calling their sale illegal.
According to an article published in the Journal of the American College of Surgeons medical researchers from Emory University found the main deterrent for organ donation is a misperception that one will receive inadequate medical care if registered as an organ donor. The results of the survey also indicated other factors deterring people from donating such an increased cost for the donor family when donating organs. "Educating the public regarding these and other misperceptions is desperately needed," says Dr Marty T. Sellers of Emory University School of Medicine, the lead author of the paper. "With education, we believe this would convert more eligible donors into actual donors, which would shorten waiting times and allow transplantation earlier in a disease process.
A new gene therapy technique that uses high doses of viruses to carry healthy genes to cells recently brought relief to 15 babies suffering from a lethal neuromuscular condition. As the first human trial with high-doses of the AAV9 virus, its success gave a huge boost to the gene-therapy field. “People are going to look back and see this as a milestone in a new type of medicine that’s going to have broad implications for lots and lots of diseases,” one researcher told Science last year. However, those hopes were chilled this week when a leading gene-therapy researcher who was involved in the successful trial also published a study in which high-dose AAV9 infusions severely affected animals. Three young rhesus macaque monkeys developed liver failure and three piglets had motor neurone damage. Some of them had to be euthanized. The cause was not immediately apparent. R. Jude Samulski, of the University of North Carolina, told MIT Technology Review that the combination of scientific ambition, technological advances, desperate patients, and potential financial windfalls could lead again to disaster. “It would be very naïve for our community to assume we won’t have toxic effects,” he says.
Baroness Jowell, who is suffering from a malignant brain tumour known as glioblastoma, addressed the House of Lords arguing that the approval process for cancer treatments needs to be quicker, and advocates the use of what are called “adaptive clinical trials” to test cancer drugs. They do this by taking a more flexible approach, allowing multiple drugs to be tested within the same trial. As a result, drugs that hold promise can be rapidly identified and tested, while other less effective drugs can be discarded. Writing in The Conversation, neuropathologist Silvia Marino and oncologist Peter Hall of Queen Mary University described the use of adaptive trials as a “more flexible approach for a new era”: “For patients with rapidly progressing, life-threatening conditions, such as glioblastoma, [adaptive trials] can make the difference between having access to a new drug or not”. But many are skeptical of the proposal. But Indiana University clinician Scott Saxman warned of significant ethical concerns including “loss of equipoise, lack of processes for adequate informed consent, and inequalities inherent in the research design which could lead to perceptions of injustice that may have negative implications for patients and the research enterprise”.
After 30 years and 3000 attempts to propose amendments, an end-of-life bill was passed by the Italian Parliament this week which allows patients to end their lives by refusing to eat and drink. It also allows patients to express binding end-of-life care wishes through a text or a video. The new legislation does not permit assisted suicide or euthanasia. However, it is clearly a momentous step in that direction. In November Pope Francis clarified the position of the Catholic Church by stressing that only "ordinary" care need be provided to the dying, not "extraordinary" care that extends life at all costs. Therefore the Catholic position maintains that eating and drinking are ordinary care, as much as hygiene. However, under the new law artificial nutrition and hydration are to be regarded as medical interventions because they are administered through health devices and, consequently, can be rejected or suspended.
The Conscience and Religious Freedom Division of the Health and Human Services (HHS) Office for Civil Rights will handle complaints related to participation in controversial medical practices such as abortion, euthanasia and assisted suicide, and gender reassignment. Federal officials said the division will allow HHS to "more vigorously and effectively" enforce laws related to conscience and religious freedom. "Laws protecting religious freedom and conscience rights are just empty words on paper if they aren't enforced”, said Roger Severino, director of the Office for Civil Rights. “No one should be forced to choose between helping sick people and living by one's deepest moral or religious convictions, and the new division will help guarantee that victims of unlawful discrimination find justice. In addition, the HHS’ Centers for Medicare & Medicaid Services (CMS) is issuing new guidance to state Medicaid directors restoring state flexibility to decide program standards. A letter rescinded 2016 guidance that specifically restricted states’ ability to take certain actions against family-planning providers that offer abortion services. The announcement was met with mixed reactions. Family Research Council President Tony Perkins praised the new measures, calling it "another moment in which President Trump's promises are becoming realities."
Northern Ireland peer Baroness Nuala O’Loan has introduced her Conscientious Objection (Medical Activities) Bill into the House of Lords. “Reasonable accommodation of conscientious objection is a matter both of liberty and equality: of individual freedom and social inclusion. No one should be coerced by the risk to their careers into violating their conscience, and it is plainly inconsistent with the principles of equality legislation to exclude whole sections of society from areas of medical employment simply because of their moral beliefs. I hope this excites support from across the country that allows us to fix this deficit of legal rights and protections". A parliamentary inquiry in 2016 found that some doctors and nurses face difficulties due to their conscientious objection to practices that they believe end a human life.
A Japanese woman in her 60s is planning to sue the government over her forced sterilization under a 1948 law. This will be the first time that state compensation has been sought for sterilisation. The mentally disabled woman in Miyagi Prefecture was a teenager when she was forced to undergo the procedure. Like some Western countries, Japan has a dark eugenic past. A 1948 Eugenic Protection Law (EPL) was intended to prevent the births of “inferior descendants” and to foster the health of mothers and pregnant women. It provided for both voluntary and involuntary sterilisation. Doctors could apply for permission for sterilisation to a regional board if a patient suffered from a range of conditions which were believed to be hereditary. According to government statistics, between 1949 and 1994 – 16,520 involuntary sterilizations were performed. Compulsory sterilisation lapsed in 1996 with the passage of the Mother's Body Protection Law. However, the Japanese government has refused to apologize to the victims or offer them compensation.
A new smartphone app, Nurx prescribes and delivers all kinds of contraception plus the morning-after pill. Since there are no consultation or delivery fees, for women with health insurance their contraception will effectively be free. For those who don’t, the service costs US$15 a month. A woman selects a prescription, answers a few health and demographic questions, and a doctor will write a prescription. The medication arrives within 3 to 5 days. Nurx automatically refills the prescription, as well. More disturbingly it accepts applications from girls as young as 12 and anyone who might be ordering the Pill for the first time – without seeing a doctor face-to-face – although Nurx does offer the option of a video chat over the phone. Since Nurx has to comply with state laws, it is available in only 15 states plus Washington DC but is pushing to roll out its coverage across the US.
According to a report in Forbes, 2% of primary care physicians’ pay is now based on “patient satisfaction metrics”. Does this mean that doctors should agree with every request from a patient? The authors of an article in JAMA Internal Medicine respond with a qualified No. They found that 68% of requests included an explicit request by the patient but that doctors complied with only 85% of these. When doctors did refuse, their satisfaction ratings could be 10 to 20 percentiles lower. “The sizes of the associations suggest that clinicians who are less likely than their colleagues to fulfil patient requests for these services could face a penalty in satisfaction ratings, potentially affecting clinician career satisfaction, compensation, and handling of subsequent requests for these services.” What doctors need, they suggest is, “Training … to provide clinicians with communication approaches that foster a positive patient experience without simply acquiescing to requests for low-value care, thereby avoiding the harms of unnecessary evaluation and treatment, maintaining good stewardship of resources and potentially enhancing clinician career satisfaction.”
Stanford medical researcher Henry Miller has declared in the Wall Street Journal that the time had come for modifying the human germline using CRISPR. It is wrong to deprive desperate parents who are carriers of genetic diseases of their chance to have healthy children. “The technology is arguably at the stage where clinical trials could be undertaken to see whether gene-edited human embryos can develop into healthy babies.” However, stem cell expert Paul Knoepfler argues that the science is very far from perfect. It’s unwise to rush into human clinical research of any kind and that’s especially true if it includes heritable genetic modification. You first need reproducible, rigorous data to back you up from sufficiently powerful studies and a good sense of anticipated risks. “What happens to the unhealthy or deceased CRISPR’d humans you made in your experiment that didn’t turn out the way you had hoped? We just say “oops”? Or what if the babies seem OK at first, but then later they become ill or die? These are not fun questions to ask or ponder, but they are deeply important if we are going into this with our eyes open.”
British High Court Justice Anthony Hayden has ruled that a 72-year-old woman in minimally conscious state following an acute hemorrhage from a brain aneurysm after a fall should have artificial feeding withdrawn. She had been on life-support for months and the Salford Royal NHS Foundation Trust recently applied to the Court of Protection for a ruling that continuing the feeding was in her best interests. But Justice Hayden ruled in favour of the woman’s daughter (who opposed feeding), saying that there was “clear and compelling” evidence (such as an email sent to her daughter before the fall) that the woman would not have wanted life support to continue. The case follows a landmark ruling in September that clinically assisted feeding and hydration may be withdrawn from patients in a persistent vegetative or minimally conscious state without going to court, where doctors and families agree.
With the rapid advance in gene-editing technology Bryan Cwik, a philosopher at Portland State University argues in the New England Journal of Medicine that “intergenerational monitoring” will be needed, not just of the first generation of modified children, but of their children and grandchildren. “Monitoring for effects of gene editing will require consent and participation from multiple generations of descendants of the original participants. Studies will therefore require researchers to have access to key medical data for entire families over several decades.” But Harvard stem cell scientist George Church writes “some critics fret about the slippery slope of human enhancement and the impossibility of obtaining consent from future generations. Doing nothing merely for fear of unknown risks is itself risky — greatly restricting the advance of medicine.
A group of scientists in Italy have managed to treat a Syrian refugee boy suffering from Junctional Epidermolysis Bullosa, a genetic disease that causes the skin to become fragile and blister. By the time he received specialist medical attention, the boy had lost almost all his skin (specifically, the epidermal layer of the skin), save a small patch on his leg and head. The research team, led by Michele De Luca at the University of Modena, grew genetically modified skin in a laboratory that could replace the lost epidermal tissue. The replacement skin was based on a sample from the patient’s remaining healthy skin, which scientists genetically modified it using a virus to deliver a healthy version of the problematic gene. The team grew enough skin to cover almost the entire body of the boy and the new epidermis was attached like a patchwork quilt, covering almost his entire body. Two years on the boy is doing well. His skin is healthy and he doesn’t need to take medication or use ointments. He is back at school, plays football and when he gets a cut it heals normally.
Disclaimer: the views and opinions expressed in these articles do not necessarily reflect those of Doctors for Life International