Overview of Policy, Ethical, and Social Considerations in Genomic and Personalized Medicine

Haga, Susanne B.

doi:10.1016/b978-0-12-800685-6.00005-9

Cited by 5 publications

(4 citation statements)

References 182 publications

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“…Increased awareness of the GINA could help address the lack of preparedness felt by many PCPs, especially those with less clinical experience. Other countries—including Australia, Canada, the United Kingdom and several others in the European Union—also have laws to protect against various aspects of genetic discrimination [ 31 ], and therefore the need to increase provider knowledge of privacy and genetic discrimination laws may be broadly applicable.…”

Section: Discussionmentioning

confidence: 99%

Primary Care Physician Experiences with Integrated Population-Scale Genetic Testing: A Mixed-Methods Assessment

Lemke

Amendola

Kuchta

et al. 2020

JPM

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The scalable delivery of genomic medicine requires collaboration between genetics and non-genetics providers. Thus, it is essential to investigate and address the perceived value of and barriers to incorporating genetic testing into the clinical practice of primary care providers (PCPs). We used a mixed-methods approach of qualitative interviews and surveys to explore the experience of PCPs involved in the pilot DNA-10K population genetic testing program. Similar to previous research, PCPs reported low confidence with tasks related to ordering, interpreting and managing the results of genetic tests, and identified the need for additional education. PCPs endorsed high levels of utility for patients and their families but noted logistical challenges to incorporating genetic testing into their practice. Overall PCPs were not familiar with the United States’ Genetic Information Nondiscrimination Act and they expressed high levels of concern for patient data privacy and potential insurance discrimination. This PCP feedback led to the development and implementation of several processes to improve the PCP experience with the DNA-10K program. These results contribute to the knowledge base regarding genomic implementation using a mixed provider model and may be beneficial for institutions developing similar clinical programs.

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Section: Discussionmentioning

confidence: 99%

Primary Care Physician Experiences with Integrated Population-Scale Genetic Testing: A Mixed-Methods Assessment

Lemke

Amendola

Kuchta

et al. 2020

JPM

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“…In our study in Pennsylvania and Bavaria, the majority of physicians and the public did not accept one centralized genetic database managed by the Government. The lack of trust was probably one of the reasons why the national U.S. biobank initiated by the Secretary’s Advisory Committee on Genetic, Health, and Society (SACGHS) in 2007 had no efforts underway [ 52 ]. Though, beginning in 2016, a new effort for the U.S. national genetic biobank with one million participants starts, called Cohort Program of Precision Medicine Initiative (PMI).…”

Section: Discussionmentioning

confidence: 99%

Personalized Medicine in the U.S. and Germany: Awareness, Acceptance, Use and Preconditions for the Wide Implementation into the Medical Standard

Kichko¹,

Marschall²,

Fleßa³

2016

JPM

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The aim of our research was to collect comprehensive data about the public and physician awareness, acceptance and use of Personalized Medicine (PM), as well as their opinions on PM reimbursement and genetic privacy protection in the U.S. and Germany. In order to give a better overview, we compared our survey results with the results from other studies and discussed Personalized Medicine preconditions for its wide implementation into the medical standard. For the data collection, using the same methodology, we performed several surveys in Pennsylvania (U.S.) and Bavaria (Germany). Physicians were contacted via letter, while public representatives in person. Survey results, analyzed by means of descriptive and non-parametric statistic methods, have shown that awareness, acceptance, use and opinions on PM aspects in Pennsylvania and Bavaria were not significantly different. In both states there were strong concerns about genetic privacy protection and no support of one genetic database. The costs for Personalized Medicine were expected to be covered by health insurances and governmental funds. Summarizing, we came to the conclusion that for PM wide implementation there will be need to adjust the healthcare reimbursement system, as well as adopt new laws which protect against genetic misuse and simultaneously enable voluntary data provision.

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“…The authors propose guidelines and considerations to address these ethical challenges, emphasizing the need for a balanced approach that respects patient autonomy while ensuring fairness and privacy. Haga (2017) provides an overview of policy, ethical, and social considerations in genomic and personalized medicine. The integration of genomic medicine into routine clinical practice necessitates careful consideration and potential revisions of current policies.…”

Section: Regulatory and Ethical Considerations In Personalized Medicinementioning

confidence: 99%

Bioinformatics and personalized medicine in the U.S.: A comprehensive review: Scrutinizing the advancements in genomics and their potential to revolutionize healthcare delivery

Tolulope O Olorunsogo,

Obe Destiny Balogun,

Oluwatoyin Ayo-Farai

et al. 2024

World J. Adv. Res. Rev.

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This study provides a comprehensive review of the role of bioinformatics in personalized medicine, particularly focusing on its integration with genomics and the consequent revolution in healthcare delivery. The primary objective was to explore how bioinformatics facilitates the transition from traditional healthcare practices to more personalized, predictive, and patient-centered medical treatments. Utilizing a systematic literature review and content analysis, the study examined peer-reviewed articles, conference proceedings, and reports from key databases like PubMed, Web of Science, and Scopus, focusing on publications from 2010 to 2023. Key findings highlight the significant advancements in genomic sequencing technologies and their application in personalized therapeutics. The integration of bioinformatics tools in healthcare systems has shown a substantial impact on patient care, emphasizing the importance of ethical and economic considerations, data privacy, and security. The study also revealed the crucial role of collaborations and partnerships within the industry and healthcare systems for the advancement of personalized medicine. The future landscape of genomic medicine presents both opportunities and challenges, particularly in disease prediction, prevention, and treatment. The study concludes with strategic recommendations for healthcare practitioners and policymakers, emphasizing the need for continuous education, robust policy frameworks, and equitable access to personalized medicine. Future research directions include the development of advanced bioinformatics tools, exploration of ethical implications, and understanding barriers to clinical integration. This study underscores the transformative potential of bioinformatics in revolutionizing healthcare delivery and patient care.

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Overview of Policy, Ethical, and Social Considerations in Genomic and Personalized Medicine

Cited by 5 publications

References 182 publications

Primary Care Physician Experiences with Integrated Population-Scale Genetic Testing: A Mixed-Methods Assessment

Primary Care Physician Experiences with Integrated Population-Scale Genetic Testing: A Mixed-Methods Assessment

Personalized Medicine in the U.S. and Germany: Awareness, Acceptance, Use and Preconditions for the Wide Implementation into the Medical Standard

Bioinformatics and personalized medicine in the U.S.: A comprehensive review: Scrutinizing the advancements in genomics and their potential to revolutionize healthcare delivery

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