Comments provided to: Office of Civil Rights, U.S. Dept. of Health and Human Services
The MRCT Center submitted a response to the Notice for Proposed Rulemaking (NPRM) request of the Office for Civil Rights (OCR) for comments on the draft, “Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. The MRCT Center applauds OCR’s considerations of the rights of people with disabilities and OCR’s effort to clarify and strengthen Section 504 of the Rehabilitation Act of 1973. The MRCT endorsed several key areas in the proposed rule Center presented some suggestions for further clarification.
The MRCT Center commented on the Census Bureau’s proposed American Community Survey Sexual Orientation and Gender Identity Test (the ‘Test’) as part of its ongoing American Community Survey Methods Panel Tests. The MRCT Center thanked the Bureau for its commitment to bringing Sexual Orientation and Gender Identity (SOGI) data collection to the foreground. In our response, we asked specific questions about the design of the ‘Test’ and the reliability and privacy of proxy reporting by one household member about the sexual orientation and gender identity of other household members.
Learn how these panelists incorporate participant perspectives to craft patient-facing materials that are accessible, culturally competent, and easy to understand. Collecting feedback enhances engagement, empowers patients, improves communication, and addresses information gaps, paving the way for enriched participant experiences and improved health outcomes.
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The MRCT Center released a series of case studies describing research stakeholder experiences of returning individual results to participants at a recent webinar in May. Given the interest and number of questions we received, we offered three virtual “Digging Deeper” sessions to foster additional discussion and learning about topics that can be challenging to navigate.
This webinar was the third of the three webinars in the Digging Deeper series. Megan Frone of the National Cancer Institute discussed a case about returning genetic/genomic results and secondary findings.
Mark Barnes, co-faculty director of the MRCT Center and Partner at Ropes & Gray, colleagues Minal Caron and Sarah Dohan at Ropes & Gray, and Barbara Bierer addressed the definition of “recklessness” in research misconduct proceedings, reviewing its history and application, and proposing a framework and factors to consider in recklessness determinations.
Presented on: July 27, August 17 and September 21, 2023
The MRCT Center released a series of case studies describing research stakeholder experiences of returning individual results to participants at a recent webinar. Given the interest and number of questions we received, we offered three virtual “Digging Deeper” sessions to foster additional discussion and learning about topics that can be challenging to navigate.
As an outgrowth of an international workshop held in Dec 2022, Dr. Bierer collaborated with experts in multiple sclerosis to develop recommendations regarding diversity and inclusivity of participants in clinical trials investigating multiple sclerosis.
