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

Abstract

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.

Representing a “revolution”: how the popular press has portrayed personalized medicine

“…Furthermore, nearly all articles (approximately 92%) detail specific PM benefits, such as the effectiveness of current or prospective PM treatments. In contrast, the exaggeration of PM benefits, which is commonly raised by critics concerned about the lack of data surrounding PM, 15 is mentioned in only 6% of articles. This conclusion aligns with past research that has mapped the phenomenon of science hype, 39 showing genetic research to be portrayed in a predominantly positive manner and as part of a near-future "revolution."…”

“…For example, commentators have questioned the clinical value of the PM approach in many contexts. 1,15,16 In addition, evidence suggests that individuals are unlikely to change their behavior in response to genetic risk information, 17,18 a common justification for the adoption of PM strategies. 19 There is also concern that the introduction of PM might lead to increases in overdiagnosis, unnecessary testing, iatrogenic injuries, 20 and health-care costs.…”

Partnering with patients in translational oncology research: ethical approach

“…Finally, they participated in elaborating two kinds of information leaflets, one for searching for genetic alterations in tumors with potential medical consequence for the patient and one concerning the future use of data or samples. This process agrees with recognizing that the legal and ethical frameworks in precision medicine and that TR must be built with a patient-centered approach, taking into account the individual concerns and expectations of patients [7, 13, 14, 32, 33]. …”

“…By doing this, Cribb stresses the risk of “ethics dumping” and blind transposition of ethical regulations that are not adapted to current practices. To avoid this risk and to facilitate the acceptance of new practices by the public at both the individual and global levels, the patient-centered approach is key [33]. We applied this approach in CARPEM and demonstrated its relevance.…”

Introduction to the article collection ‘Translation in healthcare: ethical, legal, and social implications’

“…Woolley et al [38] critically assess the frequently invoked rhetoric of ‘citizen science’ and ‘participant-led research’, comparing US and UK case studies and analysing the role of commercial companies in encouraging a participatory strategy. Budin-Ljøsne and Harris report on European Patient Interest Organisations’ perceptions of personalised medicine [39], and Nicholls et al discuss how Canadians regarded the prospect of incorporating genomic risk predictions for cancer and childhood diabetes into routine clinical practice. [40] These studies illustrate how hopes and concerns vary considerably across disease groups, technologies, and the envisioned roles of end users (patients, clinicians, and those mediating between groups).…”