Translation in healthcare: ethical, legal, and social implications
Edited by Donna Dickenson, Sandra Soo-Jin Lee, and Michael Morrison
New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, the new kinds of interactions enabled by these platforms hold the potential to empower citizens, challenge long-standing ideas such as privacy, and raise fundamental questions about how the translational patient pathway should be organised.
The ‘Translation in Healthcare: Exploring the Impact of Emerging Technologies’ conference 2015 hosted by the Centre for Health, Law and Emerging Technologies (HeLEX) at the University of Oxford brought together a wide range of voices to discuss and think more deeply about the technological, legal, ethical, and social challenges raised by new technologies in healthcare. In this cross-journal collection articles are brought together from BMC Medical Ethics and BMC Medical Genomics.
This collection of articles has not been sponsored and articles have undergone the journal’s standard peer-review process. The Guest Editors declare no competing interests.
- RESEARCH ARTICLE
“A rising tide lifts all boats”: establishing a multidisciplinary genomic tumor board for breast cancer patients with advanced disease
Research suggests that multidisciplinary genomic tumor boards (MGTB) can inform cancer patient care, though little is known about factors influencing how MGTBs interpret genomic test results, make recommendati...BMC Medical Genomics 2016 9:71Published on: 21 November 2016 - EDITORIAL
Introduction to the article collection ‘Translation in healthcare: ethical, legal, and social implications’
New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From pe...BMC Medical Ethics 2016 17:74Published on: 14 November 2016 - DEBATE
Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine
Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the establi...BMC Medical Ethics 2016 17:67Published on: 4 November 2016 - REVIEW
If you build it, they will come: unintended future uses of organised health data collections
Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are colle...BMC Medical Ethics 2016 17:54Published on: 6 September 2016 - DEBATE
Known unknowns: building an ethics of uncertainty into genomic medicine
Genomic testing has reached the point where, technically at least, it can be cheaper to undertake panel-, exome- or whole genome testing than it is to sequence a single gene. An attribute of these approaches i...BMC Medical Genomics 2016 9:57Published on: 1 September 2016 - RESEARCH ARTICLE
Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan
As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a g...BMC Medical Ethics 2016 17:51Published on: 24 August 2016 - RESEARCH ARTICLE
Unsolved challenges of clinical whole-exome sequencing: a systematic literature review of end-users’ views
Whole-exome sequencing (WES) consists in the capture, sequencing and analysis of all exons in the human genome. Originally developed in the research context, this technology is now increasingly used clinically...BMC Medical Genomics 2016 9:52Published on: 11 August 2016 - REVIEW
Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era
Biobanks have been heralded as essential tools for translating biomedical research into practice, driving precision medicine to improve pathways for global healthcare treatment and services. Many nations have ...BMC Medical Ethics 2016 17:39Published on: 12 July 2016 - DEBATE
Challenges and opportunities for ELSI early career researchers
Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research...BMC Medical Ethics 2016 17:37Published on: 8 July 2016 - DEBATE
Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives
The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. ...BMC Medical Ethics 2016 17:33Published on: 4 June 2016 - RESEARCH ARTICLE
Attitudes to incorporating genomic risk assessments into population screening programs: the importance of purpose, context and deliberation
The use of an overall risk assessment based on genomic information is consistent with precision medicine. Despite the enthusiasm, there is a need for public engagement on the appropriate use of such emerging t...BMC Medical Genomics 2016 9:25Published on: 23 May 2016 - DEBATE
Clinical decision-making and secondary findings in systems medicine
Systems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology (especially systems biology); “big data” s...BMC Medical Ethics 2016 17:32Published on: 21 May 2016 - DEBATE
Between Scylla and Charybdis: reconciling competing data management demands in the life sciences
The widespread sharing of biological and biomedical data is recognised as a key element in facilitating translation of scientific discoveries into novel clinical applications and services. At the same time, tw...BMC Medical Ethics 2016 17:29Published on: 17 May 2016 - RESEARCH ARTICLE
Patient and interest organizations’ views on personalized medicine: a qualitative study
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 pote...BMC Medical Ethics 2016 17:28Published on: 13 May 2016
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