Internet Resources
Dedicated to advancing responsible and ethical medical research practices, to ensure that the human rights, dignity and welfare of human subjects are protected, and to minimize the risks associated with such endeavors.
Ethicists and others who act as experts and leaders of public opinion need to consider this risk; endorsement of altruistic homicide may be responsible for some part of increasing numbers of children killed by parents.
Dick Sobsey, J.P. Das Developmental Disabilities Center
A society that increasingly believes in individualism, in self reliance and in less government indeed has no other option then to think about disability in a negative way.
Our aims: to promote evidence-based ethics in medicine; to promote compassion in medical care; to highlight the fact that medical excellence is not possible without ethical principles...
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
Although Mr. Olmsted occasionally features letters from parents, researchers and autistic individuals who do not share the conviction that all autistics are �poisoned,� readers already familiar with the clinical literature and popular discourse about autism are likely to notice his consistent tendency to spotlight informants (often anonymous) who insist that autism is an iatrogenic injury new to the twentieth century, and who deny the possibility that independently functioning adults on the autistic spectrum exist in more than insignificant numbers.
Kathleen Seidel, neurodiversity.net
An apology for an intervention performed without the child's assent is not an admission of wrongdoing, and apologies should be offered when appropriate.
We judged that the patient's transfer to a specialist autistic unit constituted a therapeutic procedure, which would ordinarily have required informed discussion.
It was actually not clear until the mid 1960s that children were deemed "persons" within the meaning of the Fourteenth Amendment which applies the Bill of Rights to all of the states.
Gerald P. Koocher, Patricia C. Keith-Spiegel
CIRCARE is a human rights organization dedicated to the protection of human subjects in research and medical treatment. CIRCARE's mission is to raise the ethical and professional level of human subject research and medical treatment to a level that is compatible with the principles stated in the National Human Research Protections Act (NHRPA). Support for the enactment of the NHRPA is one of the most important missions of CIRCARE advocacy.
The discovery of genetic factors will eventually hopefully lead to new approaches to diagnosis and intervention, and perhaps even prevention and cure. At the same time, genetic issues raise a range of ethical and policy issues.
We believe that a cautious approach to biotechnology is the only prudent response. Disabled people, from whatever region, can and do cite numerous examples of regular, often institutionalised, abuse of even the most basic human rights. Such evidence ensures that the disabled community will be wary of further medical and state intervention in their lives. Perhaps more worrying still is the extent to which policy-makers, civil servants and 'expert' panels have been indifferent to, or perhaps simply ignorant of, the disabled community's calls to be included in the numerous bioethics debates going on around the world. Having campaigned for, and often won, the right to be included in other debates that concern us, we are now finding that the same institutions to which we had finally gained limited access are forgetting us all over again.
Independent Living Institute
7 percent of the sexual abuse of disabled children came from bus drivers, an important finding since children with disabilities are often transported off-site for services.
Unless you, the staff, the doctors and nurses and family can convince the designated patient that any particular treatment or medication should be used, then you do not have the right to force that treatment on any person.
Once it becomes possible to create or modify individuals, the concern arises that those who are less favoured may feel more discriminated against or made to feel excluded more than they otherwise would, because of the implication that imperfection could have been avoided, and that someone is culpable.
The Ethics Code has as its goals the welfare and protection of the individuals and groups with whom psychologists work and the education of members, students, and the public regarding ethical standards of the discipline.
American Psychological Association
Conclusively, the experimental investigation performed in 1965 in attempt to find an alternative treatment method for autism was found by several people to be ethically wrong.
This site presents news reports, features, and perspectives that address all aspects of vaccination, particularly topics with ethical dimensions. Sources highlighted include the mainstream press as well as medical and government publications.
University of Pennsylvania Center for Bioethics
In December 2003, the UK's House of Commons Science & Technology Committee launched an inquiry into scientific publications to investigate pricing, access and availability issues.
href="http://www.neurodiversity.net
href="http://www.neurodiversity.net
The decision of whether to disclose the existence of an invisible disability is a very personal one. Of course, parents must disclose a child's disability in order to obtain appropriate educational services for that child; however, most states protect the privacy of children who benefit from special education programs, by restricting the dissemination of personal information to those who have a �need to know,� such as teachers, select administrators and support staff. Those with a "need to know" are generally prohibited from discussing a student's disability without the express permission of parents. One would hope that parents might eventually consult the child to see how he or she feels about it.
Kathleen Seidel, neurodiversity.net
For every hour the developmentally disabled individual gives the researcher in the name of science, the researcher should give one hour to the individual in the name of one-on-one therapy or training.
The notion that the genome contains the blueprint of human nature is akin to an important outlook within Western metaphysics that interprets all living organisms as having "souls," which determine their characteristic traits.
The horror stories of what parents have done -- or what they have allowed to happen -- to their daughters and sons occur most often when they have abdicated their common sense and parental love in favor of professional opinion.
It is critical that the rights and well-being of these human subjects be protected. Unarguably, there will be times when this imperative requires rejecting research proposals that carry unreasonable risks of harm or restricting the range of potential subjects who will be allowed to participate, but one way of protecting people's rights and interests is to help them make decisions for themselves.
"Rooter" features such mind-bending gems as: "the model for our heuristic consists of four independent components: simulated annealing, active networks, flexible modalities, and the study of reinforcement learning" and "We implemented our scatter/gather I/O server in Simula-67, augmented with opportunistically pipelined extensions."
Our aim is to use data from the MST, as well as other experiments, to explain what the moral faculty is, how it evolved, and how it develops in our species, creating individuals with moral responsibilities and concerns about human welfare. T
Primate Cognitive Neuroscience Laboratory, Psychology Department, Harvard University
The MST has been designed for all humans who are curious about that puzzling little word 'ought,' about the principles that make one action right and another wrong, and why we feel elated about the former and guilty about the latter.
Primate Cognitive Neuroscience Laboratory, Psychology Department, Harvard University
"Many of the most important issues in medical ethics today -- from genetic testing and stem cell research to caring for prisoners of war are directly affected by the experiences of medicine leading up to and during the Holocaust," Dr. Wells said. "Physicians need to explore these issues without getting caught up in political agendas or the results can be something we never intended and cause great harm."
American Medical Association
This article begins with the assumption that hospitalisation was not the optimum response to Mr L's condition, provides alternative approaches to the interpretation of best interest and examines principles of liberty, anti-discrimination, and equal protection.
Kate Diesfeld, Journal of Medical Ethics
Much of the ethos of the professional presumes, and frequently promotes, an isolated individual as the patient, and contemplates neither the existence nor ethical standing of community among patients.
According to this statement, humane experimentation is justified only if its results benefit society and it is carried out in accord with basic principles that 'satisfy moral, ethical, and legal concepts.'
We conducted a literature search to assess existing law involving parental choice of CAM therapies for their children. We also selected a convenience sample of 18 states of varying sizes and geographic locations. In each state, we inquired within the Department of Health and Human Services whether staff were aware of (1) any internal policies concerning these issues or (2) any cases in the previous 5 years in which either (a) the state initiated proceedings against parents for using CAM therapies for their children or (b) the department received telephone calls or other information reporting abuse and neglect in this domain. We asked the American Academy of Pediatrics and the leading CAM professional organizations concerning any relevant, reported cases... Pediatric use of CAM therapies raises complex issues. Clinicians, hospitals, state agencies, courts, and professional organizations may benefit from a policy framework to help guide decision making.
Does genetic screening for defects that cause intellectual disability presuppose a value judgment about the lives of intellectually disabled person, and, if so, what is the basis for such judgments?
We argue that children should not be subjected to prophylactic interventions "in their best interests" or for public health reasons when there exist effective and conservative alternative interventions, such as behavioural modification, that individuals could employ as competent adolescents or adults to avoid adverse health outcomes.
F.M. Hodges, J.S. Svoboda, R.S. Van Howe, Journal of Medical Ethics
Today's podcast departs from direct discussion of Asperger's/Autism and instead focuses on the issue of "right and wrong" and making clearcut moral decisions. While this is, of course, relevant to how individuals with Asperger's operate (they are less distracted by the "gray areas" of moral decision making and are good purveyors of what is right and what is wrong morally), I am making a foray into the world of whistleblowers.
Potential conflicts may occur when a large incentive is paid to a researcher who very rapidly enrolls volunteers into a protocol. In this case, the researcher may be tempted to recruit briskly and, perhaps, to take short-cuts or to interpret entry criteria in a biased way, albeit often unknowingly.
Teddy D. Warner, Laura Weiss Roberts
Changes in scientific publishing are "necessary as a matter of urgency" and everyone should have free, open access to UK research findings... The report recommends that UK research funding bodies mandate free access to all their research findings.
Our planned 2-week investigation had to be ended after only 6 days because of what the situation was doing to students who participated. In only a few days, our guards became sadistic and our prisoners became depressed and showed signs of extreme stress.
Experts generally agree there is no legal onus on site owners or users to notify police. But a recent case has brought up the question of how far any given Web community should go to help a member who seems to be in trouble.
Does conflict of interest really matter? Unfortunately it does. It is a principle long enshrined in the conduct of scientific research. Moreover, we can no longer ignore the growing body of evidence that conflict of interest can bias research outcomes. Systematic reviews have shown that results of sponsored studies are more likely to favour the sponsor when it is a pharmaceutical company, and industry-sponsored studies are not only associated with pro-industry conclusions, but with restrictions on publication and data sharing. As more research is funded by non-academic sources, we cannot ignore the potential for bias to affect its outcomes. Neither can we ignore an increasingly educated, involved 21st-century Western society that is calling for greater accountability in health research.
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