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Data Privacy Laws in the United States and Germany: Implications for Genomics Research and Personalized Medicine

Myers, Madison C. (2024) Data Privacy Laws in the United States and Germany: Implications for Genomics Research and Personalized Medicine. Master Essay, University of Pittsburgh.

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Abstract

In the dystopian world of "Gattaca" (1997), individuals' genetic profiles determine their fate, underscoring the profound implications of genetic information. Just as in the film, where one's genetic makeup dictates opportunities and discrimination, the burgeoning field of personalized medicine relies on genomics, making the safeguarding of genomic data a paramount concern in the integration of personalized medicine into our healthcare system. In this era of data-driven healthcare, where patient information is a vital resource, safeguarding that information through robust data privacy laws is crucial. Data privacy laws also play a pivotal role in shaping the landscape of healthcare, particularly in the realms of personalized medicine and public health, since bolstering data privacy protections for individuals’ health data will have the aggregate effect of increasing data contributions, ultimately promoting the equitable delivery of personalized medicine.
This international law case study conducts a comparative analysis of data privacy laws in the United States and Germany, focusing on HIPAA, HITECH, the Federal Data Protection Act (BDSG), and the Patient Data Protection Act (PDSG). The study aims to unravel the complex tapestry of data privacy laws in both countries, analyzing similarities and differences. By methodically examining legal provisions, consent requirements, data security measures, patient rights, and enforcement mechanisms, it illuminates the multifaceted role of data privacy in healthcare. The research investigates the impacts of these laws on healthcare delivery, research and development, and personalized medicine. Additionally, the study explores broader implications for public health, addressing alignment with international standards like the GDPR, and the ability to respond effectively to emerging public health challenges while maintaining stringent data protection standards, particularly in the aftermath of the COVID-19 pandemic.
Ultimately, this paper aims to provide robust policy analyses, critiques, and recommendations for both the United States and Germany, while also searching for a balance between increased regulation regarding data privacy and the facilitation of healthcare innovation. The recommendations consider both the ethical and practical facets of data-driven healthcare and highlight the vital role that harmonized international data privacy standards play in safeguarding the security of patient information and the advancement of public health.


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Details

Item Type: Other Thesis, Dissertation, or Long Paper (Master Essay)
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Myers, Madison C.mcm156@pitt.edumcm156
Contributors:
ContributionContributors NameEmailPitt UsernameORCID
Committee ChairHershey, Tina Batratbh16@pitt.edutbh16UNSPECIFIED
Committee MemberLi, Zhaoyizhaoyi.li@pitt.eduzhaoyi.liUNSPECIFIED
Date: 14 May 2024
Date Type: Completion
Number of Pages: 39
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Health Policy & Management
Degree: MPH - Master of Public Health
Thesis Type: Master Essay
Refereed: Yes
Date Deposited: 14 May 2024 19:40
Last Modified: 14 May 2024 19:40
URI: http://d-scholarship.pitt.edu/id/eprint/46045

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