ArticleThe oncologist2020
"My Research Is Their Business, but I'm Not Their Business": Patient and Clinician Perspectives on Commercialization of Precision Oncology Data.
Article in The oncologist, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.
- Factors Associated With Implementation of Biomarker Testing and Strategies to Improve Its Clinical Uptake in Cancer Care: Systematic Review Using Theoretical Domains Framework.JCO precision oncology · 2025Pooled it
- Reclaiming Data, Restoring Health: The Indigenous Biomedical Data Science Renaissance.Annual review of biomedical data science · 2026Review
- Decolonizing genomic data ownership: a qualitative study of legal practices and access in Uganda.BMC medical ethics · 2026Article
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- The Genetic Data Market: Institutional Governance of Academic/Industry Research Partnerships for the Public Good.The American journal of bioethics : AJOB · 2025Article
- Should recipient parents have access to gamete donors' raw genomic data? Clinical, legal, and ethical considerations.Journal of assisted reproduction and genetics · 2025Article
- Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa.PLOS digital health · 2024Article
- Review
- Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.JMIR cancer · 2023Article
- "Consent Does Not Scale": Laying Out the Tensions in Balancing Patient Autonomy with Public Benefit in Commercializing Biospecimens.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2023Review
- Sociotechnical safeguards for genomic data privacy.Nature reviews. Genetics · 2022Review
- Bioethical implications of current state practices of molecular diagnostics in neuropathology.Neuro-oncology · 2022Article
- Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis.JMIR cancer · 2022Article
- The Essentials of Multiomics.The oncologist · 2022Article
- "Doing Good" in U.S. Cancer Genomics? Valuation practices across the boundaries of research and care in rural community oncology.New genetics and society · 2022Article
- Implications of Research Biopsies in Clinical Trials.The oncologist · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 1 institution in 1 country.
Funding
Abstract
backgroundGenetic sequencing and precision oncology have supported clinical breakthroughs but depend upon access to vast arrays of research specimens and data. One way for academic medical centers to fund such infrastructure and research is "commercialization" of access to specimens and data to industry. Here we explore patient and clinician perspectives regarding cancer specimen and data commercialization with the goal of improving such processes in the future. MATERIALS AND
methodsThis qualitative analysis was embedded within a prospective precision oncology sequencing study of adults with head and neck cancer. Via semistructured dyadic interviews with patients with cancer and their doctors, we assessed understanding and concerns regarding potential commercialization, opinions regarding investment of profits, and perspectives regarding the return of information directly to participants from industry.
resultsSeveral patient- and clinician-participants did not understand that the consent form already permitted commercialization of patient genetic data and expressed concerns regarding who would profit from the data, how profits would be used, and privacy and access. Patients were generally more comfortable with commercialization than clinicians. Many patients and clinicians were comfortable with investing profits back into research, but clinicians were more interested in investment in head and neck cancer research specifically. Patients generally supported potential return-of-results from a private entity, but their clinicians were more skeptical.
conclusionOur results illustrate the limitations of mandatory disclosures in the informed consent process. The voices of both patients and their doctors are critical to mitigate violations of privacy and a degradation of trust as stakeholders negotiate the terms of academic and commercial engagement. IMPLICATIONS FOR PRACTICE: Further education is needed regarding how and why specimens and data in precision oncology research may be commercialized for both patients and providers alike. This process will require increased transparency, comprehension, and engagement of involved stakeholders.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.