Patient and interest organizations’ views on personalized medicine: a qualitative study

BMC Medical Ethics

Research Article

Isabelle Budin-Ljøsne¹  Jennifer R. Harris² 

[1] Centre for Medical Ethics, Institute of Health and Society, University of Oslo, P.O Box 1130, NO-0318, Oslo, Blindern, Norway;Norwegian Cancer Genomics Consortium, kreftgenomikk.no, Oslo, Norway;Department of Genetics and Bioinformatics, Norwegian Institute of Public Health, Oslo, Norway;

关键词: Personalized medicine;    Patient organizations;    Genetics;    Ethics;    Precision medicine;   

DOI  :  10.1186/s12910-016-0111-7

 received in 2015-12-11, accepted in 2016-05-09,  发布年份 2016

来源: Springer

【 摘 要 】

BackgroundPersonalized medicine (PM) aims to tailor disease prevention, diagnosis, and treatment to individuals on the basis of their genes, lifestyle and environments. Patient and interest organizations (PIOs) may potentially play an important role in the realization of PM. This paper investigates the views and perspectives on PM of a variety of PIOs.MethodsSemi-structured telephone interviews were conducted among leading representatives of 13 PIOs located in Europe and North-America. The data collected were analysed using a conventional content analysis approach.ResultsThe PIO representatives supported the realization of PM but feared that many financial, structural and organizational challenges may delay its realization. They encouraged strategies to modernize drug licencing mechanisms, develop research and data sharing infrastructures, and educate patients and health care professionals in PM. Notably, they emphasized the importance of developing PM in an equitable way and taking into consideration the patients’ needs, values and personal situation. Despite varying levels of awareness regarding PM, the PIO representatives expressed willingness to engage in the PM agenda and recommended that PIOs work closely with policy-makers to design PM in a way that truly addresses the needs and concerns of patients.ConclusionsPIOs have the potential to become central drivers of the PM agenda. Collaborations should be further developed between PIOs, researchers, drug developers and health care authorities.

【 授权许可】

CC BY   
© Budin-Ljøsne and Harris. 2016