NDLI: Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

Content Provider	Springer Nature : BioMed Central
Author	Erdmann, Anke Rehmann-Sutter, Christoph Bozzaro, Claudia
Abstract	Background Precision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review. Methods We used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine. Results Many patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health. Conclusions National legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment.
Related Links	https://bmcmedethics.biomedcentral.com/counter/pdf/10.1186/s12910-021-00682-8.pdf
Ending Page	18
Page Count	18
Starting Page	1
File Format	HTM / HTML
ISSN	14726939
DOI	10.1186/s12910-021-00682-8
Journal	BMC Medical Ethics
Issue Number	1
Volume Number	22
Language	English
Publisher	BioMed Central
Publisher Date	2021-08-31
Access Restriction	Open
Subject Keyword	Ethics Philosophy of Medicine Theory of Medicine Bioethics Precision medicine Personalized medicine Genomic medicine Benefits Access Knowledge Informed consent Discrimination Stigmatization Data security Theory of Medicine/Bioethics
Content Type	Text
Resource Type	Review
Subject	Issues, Ethics and Legal Aspects Health Policy Health (social science)
Journal Impact Factor	3/2023
5-Year Journal Impact Factor	3.1/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

Informed consent and registry-based research - the case of the Danish circumcision registry

Contemporary issues concerning informed consent in Japan based on a review of court decisions and characteristics of Japanese culture

Ethical aspects in tissue research: thematic analysis of ethical statements to the research ethics committee

Physicians’ legal knowledge of informed consent and confidentiality. A cross-sectional study

Personalized and long-term electronic informed consent in clinical research: stakeholder views

Practices and attitudes of herbalists regarding informed consent in Uganda: a qualitative study

Cluster randomized trial assessing the effects of rapid ethical assessment on informed consent comprehension in a low-resource setting

Research participants’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis

A mixed-methods study on perceptions towards use of Rapid Ethical Assessment to improve informed consent processes for health research in a low-income setting

Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

Similar Documents

Informed consent and registry-based research - the case of the Danish circumcision registry

Contemporary issues concerning informed consent in Japan based on a review of court decisions and characteristics of Japanese culture

Ethical aspects in tissue research: thematic analysis of ethical statements to the research ethics committee

Physicians’ legal knowledge of informed consent and confidentiality. A cross-sectional study

Personalized and long-term electronic informed consent in clinical research: stakeholder views

Practices and attitudes of herbalists regarding informed consent in Uganda: a qualitative study

Cluster randomized trial assessing the effects of rapid ethical assessment on informed consent comprehension in a low-resource setting

Research participants’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis

A mixed-methods study on perceptions towards use of Rapid Ethical Assessment to improve informed consent processes for health research in a low-income setting

Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis