Publication of Clinical Data

Whether all clinical data should be made public is complicated and controversial and poses crucial ethical, legal, and practical concerns. On the one hand, there are strong reasons to make clinical data public. Sharing clinical data can speed up scientific development, increase transparency, and allow people to make better-informed healthcare decisions. On the other hand, essential privacy, confidentiality, and security considerations must be addressed. There is also a risk that making all clinical data available will lead to misuse or misinterpretation.

Clinical trials and observational studies are examples of public patient data used to enhance care and healthcare needs. To ensure that all parties are protected, protocols and laws have been set to safeguard all parties involved in trials. Congress has created rules to protect study participants based on many years of experience and learning. Every clinical investigator is now obligated to monitor and ensure the safety of every participant. These precautions are essential to the research (National Institute on Aging, 2017).

Another example of public patient data being used to enhance care is The Centers for Cancer Genomics (CCG). Recognizing cancer genomics’ promise, the National Cancer Institute (NCI) established the Center for Cancer Genomics (CCG). After CCG researchers have released a first overview and study of the data, the data is typically made available to the public. The Genomic Data Commons (GDC) hosts most of the genomics data generated by CCG initiatives. (National Cancer Institute, n.d.).

When appropriately anonymized and combined, public patient data can be an excellent resource for improving treatment nationwide. It allows academics, healthcare providers, and politicians to detect patterns, develop targeted treatments, and drive evidence-based decision-making to improve overall care quality and public health.

References

National Cancer Institute. (n.d.). About The Center for Cancer Genomics (CCG). https://www.cancer.gov/ccg/about

National Institute on Aging. (2017, May 17). Clinical Trials: Benefits, Risks, and Safety. https://www.nia.nih.gov/health/clinical-trials-benefits-risks-and-safety

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Question

Should all clinical data be made available to the public?

Publication of Clinical Data

Why or why not? Research and provide examples of how patient data that has been made public has been used. Defend your answer by citing 2 to 3 reputable sources.

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