There is broad recognition of the need for population-based research to assess the safety and efficacy of newborn screening (NBS) for conditions that are not on current panels. However, prospective population-based research poses significant ethical, regulatory, and logistical challenges. In the context of NBS, there have been a variety of approaches that address parental decision-making in pilot studies of new screening tests or conditions. This article presents an ethical and legal analysis of the role of parental permission by the Bioethics
Medical personnel who evaluate children for child abuse and neglect (CAN) must be familiar with the many pediatric conditions that resemble CAN in order to avoid over reporting. During a 3-year period, a total of 504 suspected child abuse patients were evaluated by our CAN team. After preliminary evaluation, 264 (52%) of these cases were unsubstantiated. Eighteen of these 264 (7%) were initially considered as cases of CAN but were later proven to be conditions that were misdiagnosed as CAN. Thirteen of the 18 (72%) were readily diagnosed after consultation with a pediatrician or other health care consultant. Investigation of the remaining 5 patients (29%) was more difficult and more extensive, requiring a period of separation from the parents with consequent emotional hardship to the family. These conditions included (1) a patient with osteogenesis imperfecta type IV, (2) a patient with Ehlers-Danlos syndrome, (3) two patients with benign external hydrocephaly of infancy, and (4) a patient with Crohn's disease, who was evaluated for sexual abuse because of chronic abdominal pain. A comprehensive literature review of pediatric conditions that may mimic CAN is presented by diagnostic categories to assist clinicians in differentiating medical conditions that may simulate CAN. Methods to support parents who have been incorrectly reported are discussed.
Supporters of human enhancement through genetic and other reproductive technologies claim that the new liberal eugenics, based on science and individual consent differs from the old eugenics which was unscientific and coercive. Supporters claim it is the parent's moral obligation to produce the best children possible. At this time, a defective gene that is identified in an unborn child cannot be repaired. To prevent the manifestation of the undesirable trait the unborn child is destroyed. The arguments in support of human enhancement are based on an ethic of consequence that could allow for nearly any means as long as the desired end is reached. Medical enhancement may affect the parent–child family unit; the parents’ love for the child may be conditioned on the expected results. The new eugenics, although based on science, continues to pursue the same goal as the old eugenics, the development of a superior individual and the elimination of those considered inferior.
For the past thirty years, voluntary euthanasia and physician-assisted suicide of adult patients have been common practice in the Netherlands. Neonatal euthanasia was recently legalized in the Netherlands and the Groningen Protocol (GP) was developed to regulate the practice. Supporters claim compliance with the GP criteria makes neonatal euthanasia ethically permissible. An examination of the criteria used by the Protocol to justify the euthanasia of seriously ill neonates reveals the criteria are not based on firm moral principles. The taking of the life of a seriously ill person is not the solution to the pain and suffering of the dying process. It is the role of the medical professional to care for the ailing patient with love and compassion, always preserving the person's dignity. Neonatal euthanasia is not ethically permissible.
The American Medical Association's Council on Ethical and Judicial Affairs defines euthanasia as the act of bringing about the death of a hopelessly ill and suffering person in a relatively quick and painless way for reasons of mercy. Voluntary euthanasia is euthanasia that is provided for a competent person with his informed consent. Involuntary euthanasia is euthanasia performed without a person's consent. Assisted suicide is to provide the means whereby a suffering person may kill himself. Euthanasia was practiced by the ancients, the term means "good death." It was the practice of dying in peace and with dignity. For the physician, it meant caring for the patient with compassion and alleviating pain and suffering. However, the physician of ancient times could also cause the death of his patients. One physician would heal with compassion, another would provide the poison draught to cause death of the patient. The sick person did not know whether to expect to be healed or to be killed by the physician. The Oath of Hippocrates (500 BC) was the first attempt from a group of concerned physicians to establish a set of ethical principles that would guide the practice of medicine. This set of moral principles defined the physician as a healer, rejecting the role of purveyor of death. The principle of "primum non nocere," first do no harm, became one of the guidelines in the doctor-patient relationship and remained for 2500 years (Cameron 2001; Porter 2006). By the late nineteenth century, supported by utilitarian philosophy and Darwinian survival of the fittest, the concept of a right to death surfaced in Europe. Articles appeared in the German medical literature. In 1920, Karl Binding and Alfred Hoche published the manuscript "Permitting the Destruction of Unworthy Life." Members of the intellectual elite; Binding was a prominent jurist and Hoche a professor of psychiatry. With the intent to benefit society, the authors advised eliminating those whose life was devoid of value and a burden to society. The victims were those near death who requested to die, "idiots," whose life was without a purpose, and those in a comatose state due to trauma with little chance of recovery. The publication was a landmark for the euthanasia program that would follow; widely discussed in academic circles. Advocates of euthanasia, few at first, gradually increased in number, many were academic physicians and professors at medical schools. The systematic, organized killing began in the 1930s. It started with the killing of infants and children with congenital defects and mental retardation followed by disabled and mentally ill adults and the terminally ill. The killing criterion was subsequently expanded to include adults and children with 'antisocial behavior' and those with minor handicaps. Children and adults from psychiatric institutions were killed by lethal injection. When this method proved costly and awkward, gas chambers were built in some hospitals. Patients were transferred to these
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