Over the past several years, multiple organizations within multiple industries have become more transparent with their consumer base. Many food businesses are now revealing the ingredients in their products, manufacturers are revealing where their products are made, and even the US government is attempting to become more transparent with the public, especially in relation to scientific data stemming from the medical field. Multiple governments in Europe as well as Canada have already set systems in place to make scientific data for new drugs, biological treatments, and medical devices available for public scrutiny. US universities were supposed to take a leap in this direction by reporting their raw data to the government site ClinicalTrials.gov, but according to an article released early in 2019, more than 30% of the studies have yet to deposit their data to the website. While we can commend the government for trying to become more like our Northern neighbors, a plan to expose the raw data of scientific and medical research to the public before accepting the conclusions (which includes confidential medical records), we all can agree, is highly debatable at best.
First reported by the New York Times, the new Environmental Protection Agency (E.P.A.) Strengthening Transparency in Regulatory Science proposal will, according to officials, “plan a step toward transparency and… allow conclusions to be verified independently.” Though the E.P.A., in response to the New York Times article, reports the article is, “completely false,” and, “not true,” journal editors from Science, Nature, PLOS, Cell Press, and the Proceedings of the National Academy of Sciences also responded to the proposal with a combined statement:
“We urge the E.P.A. to continue to adopt an approach that ensures the data used in decision-making are the best available, which will at times require consideration of peer-reviewed scientific data, not all of which may be open to all members of the public.”
Indeed, asking researchers to expose the medical records of the individuals they are currently studying undoubtedly can be chalked up as an ethical debate, it also goes against the government HIPAA Privacy Rule that regulates the disclosure of medical information “without patient authorization.” Subjecting researcher’s work as null simply because they refuse to hand over sensitive information hardly seems appropriate or fair. In an opinion piece from STAT, several Ph.Ds.’ (including Elsevier’s Director of Scholarly Communications, William Gunn) report that research journals are already using data availability rules that allow medical data to be shared, but without breeching any privacy laws in the process.
If the research community has already found a way to successfully protect private data while still producing accurate science, surely there can be a way for the government to come to a similar understanding. Time will tell, as the E.P.A looks to formally decide on this rule early in 2020.
IGI Global offers numerous opportunities to publish medical research. Please visit the Publications Seeking Submissions page for a list of eligible books and journals, or submit a proposal for a new book.
For your reference, find below a sample of related medical ethics titles.
About IGI Global: Founded in 1988, IGI Global, an international academic publisher, is commitment to producing the highest quality research (as an active full member of the Committee on Publication Ethics “COPE”) and ensuring the timely dissemination of innovative research findings through an expeditious and technologically advanced publishing processes. Through their commitment to supporting the research community ahead of profitability, and taking a chance on virtually untapped topic coverage, IGI Global has been able to collaborate with over 100,000+ researchers from some of the most prominent research institutions around the world to publish the most emerging, peer-reviewed research across 350+ topics in 11 subject areas including business, computer science, education, engineering, social sciences, and more. To learn more about IGI Global, click here.
Newsroom Contact
Caroline Campbell
Marketing Manager
ccampbell@igi-global.com
(717) 533-8845, ext. 144
www.igi-global.com/