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In Honor of Nobel Laureate Dr. Avram Hershko
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SIPS 2024 takes place from October 20 - 24, 2024 at the Out of the Blue Resort in Crete, Greece

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More than 500 abstracts submitted from over 50 countries


Featuring many Nobel Laureates and other Distinguished Guests

ADVANCED PROGRAM

Orals | Summit Plenaries | Round Tables | Posters | Authors Index


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Oral Presentations


8:00 SUMMIT PLENARY - Marika A Ballroom
12:00 LUNCH/POSTERS/EXHIBITION - Red Pepper

SESSION:
LawsMonPM1-R4
Dibra International Symposium (4th Intl Symp on Laws & their Applications for Sustainable Development)
Mon. 21 Oct. 2024 / Room: Minos
Session Chairs: Haruhiko Inufusa; Samuel Berger; Student Monitors: TBA

14:00: [LawsMonPM104] OS
RECOMMENDED REFORMS IN THE PRACTICE OF OBTAINING INFORMED CONSENT FOR SHARING MEDICAL AND HEALTH DATA
Shinto Teramoto1
1Kyushu University, Fukuoka, Japan
Paper ID: 87 [Abstract]

To facilitate the sharing of medical and health information across jurisdictions, harmonizing related practices appears to be essential. It is highly likely that governments and legal professionals will consider establishing international treaties or agreements for this purpose. However, it remains questionable whether they can effectively harmonize the actual practices of medical and healthcare professionals.

A more practical and swift approach, suitable for jurisdictions with diverse personal information protection laws, would involve implementing measures that ensure the collection of evidence demonstrating prior and express informed consent, and the ability for patients and other data subjects to withdraw consent. These measures should also aim to minimize the burden on both medical and healthcare service providers and the data subjects. Furthermore, if these measures become de facto standards—and ideally evolve into de jure standards—they would help domestic courts recognize practices compliant with these standards as lawful.

To design measures that face less resistance across various jurisdictions, efforts should be made to minimize conflicts with existing personal information protection legislation. A key aspect of this involves maintaining a straightforward informed consent process. Typically, this process includes disclosing the scope and purpose of using certain personal information and securing either implied or express consent from the data subject. The author suggests reforms in the practice of obtaining informed consent for sharing medical and health data, recommending the use of a common ITC platform to provide information and secure informed consent.

References:
[1] Kaye, J., Whitley, E., Lund, D. et al. Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet 23, 141–146 (2015). https://doi.org/10.1038/ejhg.2014.71
[2] Japan Association for Medical Informatics. (2021, May). Guidelines for secondary use of personal health information. https://www.jami.jp/wp-content/uploads/2021/07/amed2_report.pdf


14:20 POSTERS/EXHIBITION - Ballroom Foyer