David Magnus | Summary and Q&A

TL;DR

Bioethics plays a crucial role in balancing privacy and consent concerns with the need for effective research using big data.

Key Insights

• 😃 Bioethics addresses the delicate balance between privacy and consent in big data research.
• 😃 Types of big data, like electronic health records, are collected without explicit consent, raising ethical concerns.
• 👨‍🔬 Research is being done to assess the importance of consent and explore different oversight measures.
• 👨‍🔬 Patients value both consent and research participation, and efforts are being made to inform them about research outcomes.
• 💁 Real-time feedback and information about research contribute to patients' sense of altruism and engagement.

Transcript

thank you for being with me today I wanted to talk a little bit more about your work with bioethics can you tell me how bioethics fits in with big data sure it doesn't actually a number of different ways obviously people are very concerned about issues around privacy and informed consent and in a lot of ways there's a real trade-off that everybody'... Read More

Questions & Answers

Q: How does bioethics fit in with big data?

Bioethics plays a crucial role in addressing concerns around privacy, informed consent, and finding a balance between protecting subjects' autonomy and enabling effective research using big data.

Q: Are there types of big data being collected without consent?

Yes, routine uses of electronic health records data and some biospecimens are collected without explicit consent. The current regulatory system considers de-identified data as not requiring human subjects protections.

Q: What are researchers doing to address consent concerns?

Researchers are conducting research to understand the trade-offs and determine if certain oversight measures can ameliorate consent concerns. They are also exploring the possibility of returning research results to participants and providing real-time feedback on research outcomes.

Q: What do patients think about consent and research participation?

Patients want to be asked for consent and have the ability to know what's going on in research. However, they also value the importance of research and want it to take place. Efforts are being made to understand patients' perspectives and find ways to maximize their sense of involvement and information without hindering research.

Summary & Key Takeaways

• Bioethics involves balancing privacy and informed consent with the need for meaningful research using big data.

• Some types of big data, such as electronic health records and biospecimens, are collected without explicit consent.

• Research is being conducted to understand the trade-offs and determine if certain oversight measures can address consent concerns.

• Patients value both consent and the ability to contribute to research, and efforts are being made to provide real-time feedback on research outcomes.