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March
18
  9:47:00 PM

New Zealand river declared a legal person

In the latest wrinkle in debates over personhood, a Māori iwi (tribe) in New Zealand has succeeded in getting Parliament to recognise the Whanganui River as a legal person.

"It's not that we've changed our worldview, but people are catching up to seeing things the way that we see them," Adrian Rurawhe, a Māori member of Parliament. The North Island river, New Zealand’s third longest, also known by its Māori name of Te Awa Tupua, will be represented by two legal guardians, one appointed by the iwi and the other by the government.

The settlement, which has been in dispute for at least 140 years, also includes NZ$80 million in financial redress and $30 million toward improving the environmental, social, cultural and economic health and wellbeing of Te Awa Tupua. 

Riverine personhood is an untested concept in a Western legal system. According to the government, Te Awa Tupua will now have its own legal personality with all the corresponding rights, duties and liabilities of a legal person. Lawyers say that the river cannot vote and cannot be charged with homicide if people drown in it. But it will have to pay taxes, if liable. The gender of the river is unspecified at the moment.

"I know the initial inclination of some people will say it's pretty strange to give a natural resource a legal personality," said New Zealand's Treaty Negotiations Minister Chris Finlayson. "But it's no stranger than family trusts, or companies or incorporated societies."

As soon as the third reading of the bill passed, members of the gallery broke into a waiata (a song of celebration) which is well worth watching. 

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March
18
  9:26:00 PM

When stem cell treatments go wrong, they really go wrong

Three elderly women in Florida have been blinded by an unproven treatment, as a reminder of how dangerous stem cell therapies can be. The New England Journal of Medicine reports that the women signed up for a purported clinical trial in 2015 – for which they had to pay US$5,000. Within a week, they experienced a variety of complications, including vision loss, detached retinas and haemorrhage. Before the surgery, the vision in their eyes ranged from 20/30 to 20/200. They are now blind.

The article is a "call to awareness for patients, physicians and regulatory agencies of the risks of this kind of minimally regulated, patient-funded research," said Jeffrey Goldberg, of Stanford University School of Medicine and a co-author.

"There's a lot of hope for stem cells, and these types of clinics appeal to patients desperate for care who hope that stem cells are going to be the answer, but in this case these women participated in a clinical enterprise that was off-the-charts dangerous," said Thomas Albini, another co-author.

At the clinic, U.S. Stem Cell Inc, fat cells from the patients’ abdomens were processed to obtain stem cells which were injected into their eyes. Patients reported that the entire process took less than an hour. The patients had both eyes treated at once -- even though most doctors would opt for a conservative approach to observe how the first eye responds.

"There is a lot of very well-founded evidence for the positive potential of stem therapy for many human diseases, but there's no excuse for not designing a trial properly and basing it on preclinical research," Goldberg said.

The "trial" lacked nearly all of the components of a properly designed clinical trial, including a hypothesis based on laboratory experiments, assignment of a control group and treatment group, collection of data, masking of clinical and patient groups, and plans for follow-up, Goldberg and Albini said. "There was a whole list of egregious things," Albini said.

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March
18
  9:10:00 PM

Costa Rica’s resistance to legal IVF crumbles

Ronald Reyes/The Tico Times    

A girl named Maria José has become the first IVF baby to be born in the Central American nation of Costa Rica. Her parents, Jenny Garbanzo y José Barana, had been lobbying for the right to access IVF in Costa Rica since 2007. However, under a ruling by the Supreme Court in 2000, IVF was banned because it resulted in the destruction of embryos. It took substantial international pressure to force the government to give in.

The first IVF procedures were carried out in middle of last year at two certified private clinics.

The Inter-American Court of Human Rights (IACHR) has also ordered the government to make IVF available at public hospitals. Construction of a public fertility clinic is scheduled to begin in August next to the National Women’s Hospital, near the Costa Rican capital of San José. The government is also funding overseas training of IVF specialists from Costa Rica for the clinic. The first procedures in public hospitals will begin in 2018. 

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March
18
  8:22:00 PM

New bill may give employers a mandate solicit genetic information

A controversial new bill to debated by US Congress may pave the way for companies to ‘fine’ employees for failing to provide genetic information.

The bill, labelled the Preserving Employee Wellness Programs Act, has been described by its supporters as a continuation and clarification of the wellness program policies outlined in the Obama Administration’s Affordable Care Act.

Yet according to its critics, it could allow bosses pressure their employees to undergo genetic tests, and demand to see the results. Employers could even ask to see test results and medical histories for family members, with workers facing up to a 30% increase in their insurance if they refuse.

“[The Bill] means that an employee has virtually no control over their own genetic information”, State College lawyer Jennifer Wagner told The Atlantic.

The bill was approved last Wednesday by the House Committee on Education and the Workforce, with a spokesperson saying that it “reaffirms wellness program policies reflected in the Affordable Care Act and provides uniformity to the regulations governing those programs”.

Those involved in genetics research have also expressed concern that individuals may no longer participating in genetic testing, due to fears that their employers will request the data.

“People might not want to benefit from clinical advances out of fear of genetic discrimination,” Derek Scholes, director of science policy at the American Society of Human Genetics, told The Atlantic.

Last week BioEdge reported on newly passed Canadian legislation, which prohibits ‘genetic discrimination’ by employers.

 

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March
18
  3:49:00 PM

Almost 450 Quebec patients were euthanised last year

New data released on assisted dying in Quebec indicates that requests for euthanasia doubled in the province in the second half of 2016.

According to statistics compiled by the Protection of Conscience Project, 441 people in the region requested euthanasia in the second half of 2016, up from 266 in the first half of the year. In total 449 people were euthanized in Quebec in 2016, 163 in the first half of the year and 286 in the second half.

According to Dr. Alain Naud, a urologist at the Centre hospitalier universitaire de Québec, the data indicates medical aid in dying is meeting a societal need, and the process is "increasingly known to the population and caregivers."

Canada and Quebec have two separate laws governing medical assistance in dying. Quebec's law, which is narrower than the recently passed federal version, requires that applicants "be at the end of life."

Predictions in the Project of Conscience study suggest that if the rate of increase in euthanasia continues, MAID will account for close to 1% of deaths in Quebec in 2017.

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March
18
  3:41:00 PM

Anti-vaxxing: childcare and healthcare sanctions in Australia

The vaccination debate has intensified in Australia, with Prime Minister Malcolm Turnbull urging lawmakers to stop anti-vaxxer parents from sending their kids to day care.

Australian State governments have the power to sanction anti-vaxxers, and some already prevent objectors from enrolling their children in childcare. But Mr. Turnbull said he wants these provisions rolled out around the country, to further improve vaccination rates. "This has got to be a concerted national effort by all governments to ensure all our children can be vaccinated. No jab, no pay, no play”, he told reporters on Sunday.

The Turnbull government has already made family tax benefits conditional on child immunisation, abandoning a former policy that allowed ‘conscientious objection’ to vaccination.

University of New South Wales Professor of Public Health C Raina MacIntyre criticised the Turnbull announcement, saying that the ‘no jab, no play’ policy could “disadvantage working parents and their children, and may have other unintended consequences.”

Researchers from the Universities of Sydney and Melbourne argue that more attention needs to be given to “educating” parents on the benefits and low risks of vaccination. Writing in The Conversation, Drs. Julie Leask, Margie Danchin and Nina J Berry said that “parents are all different [and] It makes sense to respond to them differently.” “Many times, a hesitant parent will bring their concerns to a health professional who skilfully addresses their concerns, and the parent decides to vaccinate the child…”, they wrote.

While the Turnbull reforms have been generally well received by the Australian public, some healthcare analysts have expressed concerns about Australian doctors refusing healthcare to children who are unvaccinated.

A recent Australian Child Health Poll of almost 2,000 parents found among 5% of children who were not up-to-date with the vaccinations, one in six had been refused care — particularly those under the age of six years.

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March
18
  3:36:00 PM

Over 800 medical personnel killed in Syrian war

A new report published in The Lancet presents a grim picture of humanitarian abuses in Syria. It claims that more than 800 healthcare workers have been killed in the country since the outbreak of a civil war in 2011.

The study estimated 814 medical personnel were killed between March 2011 and February 2017 -- a figure that may not capture many unreported deaths.

The report was prepared by a team of researchers from the American University of Beirut, in collaboration with The Lancet, and draws together data from dozens of organisations that have been monitoring the conflict.

The report’s authors write of what they call the “weaponisation of healthcare” in Syria, and suggest a series of “policy imperatives for international bodies”, such as “strengthening accountability towards protection of health workers”.

Karl Blanchet, director of the Health in Humanitarian Crises Centre at the London School of Hygiene & Tropical Medicine, said the findings raise a serious issue which affects other countries in addition to Syria.

"Syria is just the tip of the iceberg. In Afghanistan and Yemen today, international humanitarian organizations ...report attacks on health facilities every week. Patients have been shot while traveling in ambulances in Colombia, ambulances are used in suicide attacks in Afghanistan, doctors are murdered in Somalia, and hospitals bombed in Afghanistan, Yemen and Libya,” he told Reuters.

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March
11
  10:57:00 PM

UK report on prenatal testing calls for ban on sex disclosure

A new report by the UK's Nuffield Council on Bioethics, “Non-invasive prenatal testing: ethical issues”, has probably pleased no one by trying to steer a course between banning abortions for sex-selection and allowing abortions for the most common kind of foetal abnormalities.

NIPT is a major breakthrough. It uses a blood sample taken from the pregnant woman and can be done from 9 or 10 weeks of pregnancy. It analyses DNA from the placenta that circulates in the woman's blood to estimate the chance that the fetus has Down's, Edwards' or Patau's syndromes, as well as single-gene disorders like cystic fibrosis and achondroplasia. It can also determine its sex.

The test is currently available in the UK through private hospitals and clinics, and in some NHS (ie, public) hospitals. Last year, the UK Government announced that from 2018, the NHS will offer NIPT to pregnant women who have been found through initial screening to have at least a 1 in 150 likelihood of having a fetus with Down's, Patau's or Edwards' syndromes.

The report says that NIPT should lead to fewer false results and fewer diagnostic tests, which carry a small risk of miscarriage. In the case of Down syndrome fetuses, 200 more would be identified (with 90% or more being aborted) and 17 fewer miscarriages of healthy foetuses because of invasive tests.

In addition, the Nuffield Council calls for a moratorium on the use of NIPT in sequencing the whole genome of fetuses; it wants a ban on its use in finding out the sex of the fetus because that would lead to sex-selective abortion.

The Council is clearly worried about private providers who might be more interested in selling the test than in giving women genetic and personal counselling.

The report devotes a whole chapter to an analysis of the ethics of NIPT, with much “on the one hand” and “on the other hand”. However, it basically endorses what it calls “liberal eugenics”: that techniques “capable of improving the genetics of future children are acceptable only when they are freely chosen by individual prospective parents, rather than when they are encouraged or imposed by the state”.

Unfortunately, the report’s reasoning is that pre-natal testing may have become so intertwined with modern reproduction patterns that eventually it will be difficult to ban anything. A woman’s right to choose will nearly always trump the right of the disabled to live:

“The enhanced reproductive choices provided by NIPT are continuous with those provided by reproductive options that have helped to make our society fairer and more equal for women and are likely to support these trends, insofar as they increase the control that women are able to exert over the circumstances under which they become mothers.” 

All in all, the report gives the impression that the UK Government, like King Canute, is attempting vainly to halt the advance of controversial policies like sex-selective abortions and parental eugenics with a dike of words. As a recent article in the AMA Journal of Ethics contended, NIPT is likely “to cause the category of ‘normal to diminish and the category of ‘abnormal’ to grow”. 

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March
11
  10:41:00 PM

Will curing the deaf lead to ‘cultural genocide’?

It is estimated that half of the world’s estimated 7,000 languages are in danger of disappearing. Under pressure from dominant languages to assimilate, linguistic communities shrink, wither and disappear. Every fortnight, the last fluent speaker of a language dies, according to some experts.

People who use sign language fear that this could happen to them. Some theorists of deafness argue that the Deaf are a distinct ethnic group, not a group of disabled individuals. So Deaf English speakers fear that the rapid progress of genetic editing could kill their community and their language as well.

Writing in the Impact Ethics blog, Teresa Blankmeyer Burke worries that gene therapy for hereditary deafness threatens the rich world of the Deaf and could even be described as cultural genocide.

The argument goes like this: the use of gene therapy to cure hereditary deafness would result in smaller numbers of deaf children. This, in turn, would reduce the critical mass of signing Deaf people needed for a flourishing community, ultimately resulting in the demise of the community.

Part of the problem is that the advantages of being a member of the Deaf community are far from obvious to the dominant culture which is not hearing-impaired. As she has pointed out:

What gets overlooked is the issue of human flourishing. What should be asked is whether the experience of being a full-fledged member of the signing Deaf community constitutes a kind of human flourishing that ought to continue to be a way of life for deaf people ...

Full access to a language ought to be a right for all persons possessing the capacity for language. But one can only have full access to a language if there is a thriving language community and this means ensuring the conditions that make this possible. If the people who use the language disappear, not by social attrition, but through biomedical campaigns predicated on the assumption that it is a harm to be deaf, so does this option for human flourishing.

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March
11
  10:32:00 PM

IVF world market to reach US$12 billion

The world market for IVF and IVF products will grow from US$8.4 billion this year to $12.5 billion on 2022, according to a report from a market research company.

Research and Markets says that “Factors driving growth in the market are increasing number of cases of infertility owing to lifestyle changes involving unhealthy nutritional habits, penetration of advanced procedures in developing nations, and favorable government initiatives. Geographically, Asia-Pacific is expected to witness the highest growth owing to rising aging population in Japan, favorable childbearing policies in China and rising awareness in countries like India, South Korea, and Thailand.”

Demand for IVF is growing at about 10% annually, owing to rising awareness and social acceptability. Infertility is not just a Western problem, with about 25% of couples in developing countries affected by it, according to the World Health Organisation. An article in PLOS says that in 2010, about 48.5 million couples worldwide were infertile.

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 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


 upcoming events

Passport to Parenthood: Evidence and Ethics behind Cross-Border Reproductive Care
November 24, 2010, London
Progress Educational Trust asks whether fertility tourism is a problem or a solution.

10th World Congress of Bioethics
July 28-31, 2010, Singapore
Bioethics in a Globalised World

Created in the Image of God: realities and challenges in caring for the human person
April 30 - May 2, 2010, Montreal
AGM of Canadian Federation of Catholic Physicians’ Societies; featured speakers include Edmund Pellegrino and Margaret Somerville.

Consequences of the Bio-Medical Revolution
May 1, 2010, Biola University, La Mirada, CA
Helping nurses understand technological advances in health care and their ethical consequences.

Fertility, Infertility and Gender
June 16-18, 2010, Maynooth, Ireland (near Dublin)
Sponsored by the Linacre Centre for Healthcare Ethics, Oxford.


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