Patient and interest organizations’ views on personalized medicine: a qualitative study
Open accessAbstract
BACKGROUND: Personalized 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. METHODS: Semi-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. RESULTS: The 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. CONCLUSIONS: PIOs 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.
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Incidental findings, variants of unknown significance or results that indicate a high risk for an incurable disease can affect the well-being of patients.
“Incidental findings [79, 96], variants of unknown significance [79] or results that indicate a high risk for an incurable disease can affect the well-being of patients [51].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [96]
In Results > PM challenges (page unavailable), a representative says unexpected genetic findings can give patients information that is “hard to digest,” supporting a possible effect on well-being. The passage does not specifically address results indicating a high risk of an incurable disease, the clause to which this citation is attached. (LLM, conf=0.80)
Experimental — accuracy not yet measuredProfessionals, patients and representatives from patient organizations are concerned about whether health insurance companies will cover the costs or patients can pay for them.
“For example, professionals [45, 120], patients and representatives from patient organizations are concerned about whether health insurance companies will cover the costs [51, 63, 76] or patients can pay for them [61, 95, 96].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [96]
The Results section (‘PM challenges’) reports that patient-organization representatives feared targeted drugs were too expensive for patients unless payers fully covered them. This supports the concern about coverage and affordability, but the passage does not establish that patients themselves expressed it or identify the payers specifically as health insurance companies. The sentence cites other sources for professionals’ concerns. (LLM, conf=0.83)
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- Authors
- Budin-Ljøsne, I., & Harris, J. R.
- Affiliations
- Norwegian Institute of Public Health (NO)
- ORCID
- Harris, Jennifer R.
- Venue
- BMC Medical Ethics
- Published
- 2016-05-13
- Volume
- 17
- Issue
- 1
- Pages
- 28-28
- ISSN
- 1472-6939 (ISSN-L)
- PMC
- PMC4866041
- OpenAlex
- W2353511237
- Cited by
- 32
- References
- 28
- Citations by year
- 2025: 2 · 2024: 1 · 2023: 2 · 2022: 3 · 2021: 6 · 2020: 4 · 2019: 3 · 2018: 4 · 2017: 4 · 2016: 3
- FWCI
- 3.76
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- BMC Medical Ethics (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- BIBSYS Brage (BIBSYS (Norway)) (submittedVersion)
- NORA - Norwegian Open Research Archives (submittedVersion, other-oa)
- NORA - Norwegian Open Research Archives (submittedVersion, cc-by)
- Funders
- Norwegian Cancer Genomics Consortium (NFR BIOTEK2021/ES495029)
- Topics
- Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
- Life Sciences › Pharmacology, Toxicology and Pharmaceutics › Pharmacology › Pharmacogenetics and Drug Metabolism
- Health Sciences › Medicine › Health Informatics › Artificial Intelligence in Healthcare and Education
- Keywords
- personalized medicine, stakeholder perspectives, drug approval, data sharing infrastructure, health equity, patient education, health policy, stakeholder collaboration, implementation barriers
- MeSH terms
- Attitude, Consumer Advocacy, Community Participation, Delivery of Health Care, Europe, Humans, North America, Organizations, Nonprofit, Research, Qualitative Research, Precision Medicine
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