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Study: Research Subjects Might Consent to Records Use, But Want to be Asked
Researchers and IRBs could learn a lot about what research participants want with informed consent and privacy if they ask. One way to find out what research subjects think is called democratic deliberation. Using this technique, researchers found that most patients want someone to ask them before deidentified medical records are used for research.
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Need Researchers to Pay Attention? Try Experimenting With Engaging Content
At one time or another, IRBs have ignored some part of the website content, simply adding new information rather than revamping educational pages and instructions. This can lead to redundancy and waste. A better long-term solution is to replace older educational information for researchers with more engaging content.
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Money Matters: Payment to Research Participants ‘Haphazard’
The authors of a new study on payment to research participants underscored concerns that “undue influence” of higher payments may be overemphasized in compensation to human subjects. They found wide variation of payment practices across studies in the same region and populations, suggesting a “haphazard” approach to compensation for research participation.
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Right to Try in Oncology: Gatekeepers or Mercenaries?
While the federal Right to Try law passed in 2018 has thus far resulted in little activity, bioethicists expect oncology will be on the frontlines of an anticipated increase in requests for investigational new drugs.
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Gene-Altered Twins Face Uncertain Future
Chinese twins born in 2018 face a future fraught with potential health complications after a rogue gene-editing experiment that “basically broke every single principle of ethical medical research,” an expert says. The experiment shocked many in the scientific community, who cited widespread agreement that there were too many unknowns to proceed with CRISPR in human research subjects.
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Study: Preoperation Preparation Can Lead to Faster Discharge
Eating healthy and reducing stress before surgery could lead to a shorter hospital stay after the procedure.
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Sports-Related Concussion
Media coverage of professional athletes experiencing irreversible damage after repeated brain trauma and of the underreported rates and risks of pediatric concussion have heightened awareness surrounding head injury in sports and recreation. Concussion is now known to be a significant public health issue, with high rates of emergency department visits and hospitalizations. Much of the current concern surrounding concussions revolves around recognition, early diagnosis, treatment modalities, return-to-play, and prevention of recurrent concussions.
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Pediatric Oncology Ethics Consults Few in Number, Limited in Scope
Research findings may suggest clinicians do not recognize ethical dilemmas other than treatment-related decision-making and care goals at life’s end. More education could help medical teams identify important ethical issues and to call on the proper resources to address those issues when needed.
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Even the Best Ethics Consults Can Result in Dissatisfaction
It may boil down to disagreements among patients, families, and caregivers about what is best.
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Nearly Half of Pediatric Oncology Patients Receive No Palliative Care
An analysis revealed palliative care discussions do not happen until late in the illness trajectory. Further, the review revealed actual palliative care does not begin until close to time of death.