Medical Ethics Advisor
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Most Parents Decide on Study Participation Before Receiving Consent Form
Efforts to improve informed consent for research usually focus on consent forms, making them shorter, less complicated, and easier to understand. A recent study revealed most parents decide whether they want their children to participate in research before they ever see a consent form.
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‘It’s a No-Man’s Land’: The Pitfalls of Genetic Data-Sharing and Informed Consent
It is unclear how well participants really understand all the potential risks of sharing their DNA. Researchers are ethically obligated to be sure that what they are asking people to consent to is just, fair, appropriate, and respectful of human rights.
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Privacy Remains Central Problem with Genomic Data-Sharing
Making the system more trustworthy requires greater transparency, clear principles of accountability, and more comprehensive laws and regulations that protect against discriminatory uses of genetic information. The results of a recent survey may reveal the work ahead.
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New Guidance Outlines Ethics of Embryo Research
According to the statement, human embryo research is ethically acceptable if it is “likely to provide significant new knowledge that may benefit human health, well-being of the offspring, or reproduction.”
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Ethical Concerns About Surge of Involuntary Psychiatric Detention, Lack of Data
There is no national database on involuntary detentions. States and jurisdictions inconsistently report rates. States differ as to what label they use for detentions; whether they count events or unique persons; whether they report the age group (adult or child), sex, or ethnicity; whether the detention is short- or long-term; how long people are held; whether all eligible counties or institutions are reporting; who prepares the data; and time frames to release data.
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Decisions on Family Observing Resuscitation Efforts Center on Autonomy, Beneficence
Ethicists can discuss underlying issues with clinicians proactively. They also can help develop clear, consistent policies on family-witnessed resuscitation.
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Price Transparency: Ethicists Can Play a Role
Hospitals are devoting plenty of resources to the logistics of how they are going to comply with new federal price transparency requirements. There also are important ethical implications.
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Consults Alone Do Not Give Full Ethics Picture: Much Work Goes Unacknowledged
Ethics services are finding that the number of consults requested does not tell the full story of their workload. Insiders share tips on how to quantify these duties.
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Ethics Volunteers Still Can Be ‘Fired’ from Committee
It may be worth giving time to the member without ethics knowledge who is willing to learn or a person still developing proper interpersonal skills. Leaders can help teach these skills, transforming borderline members into essential contributors.
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Revised Policy on Organ Transplants for Children with Disabilities Targets Discrimination
Children with disabilities can be organ donors, contributing to the supply. Excluding these patients as organ recipients would not be fair. A new policy statement does not consider intellectual and developmental disabilities (IDD) completely irrelevant, but the authors do not consider IDD to be dispositive for listing decisions either.