List of works - Karin Rolanda Jongsma

A mobile revolution for healthcare? Setting the agenda for bioethics

article

After the fact-the case of CRISPR babies

scientific article published on 24 June 2019

Autism, autonomy, and authenticity

scientific article published on 01 March 2020

Beyond competence: advance directives in dementia research

scientific article

Dementia and advance directives: some empirical and normative concerns

scientific article published on 15 June 2018

Dementia research and advance consent: it is not about critical interests

scholarly article by Karin Rolanda Jongsma & Suzanne van de Vathorst published August 2015 in Journal of Medical Ethics

Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol

scientific article published on 15 September 2018

Epistemic injustice in dementia and autism patient organizations: An empirical analysis

scientific article published on 8 November 2017

Ethical implications of visual neuroprostheses—a systematic review

scientific article published on 27 April 2022

Ethics parallel research: an approach for (early) ethical guidance of biomedical innovation

scientific article published on 01 September 2020

Experts’ moral views on gene drive technologies: a qualitative interview study

scientific article published on 08 March 2021

Has dementia research lost its sense of reality? A descriptive analysis of eligibility criteria of Dutch dementia research protocols

scientific article published on June 2016

Integrating Advance Research Directives into the European Legal Framework

Losing Rather than Choosing: A Defense of Advance Directives in the Context of Dementia

scientific article published on 01 August 2020

Morally Relevant Similarities and Differences Between Children and Dementia Patients as Research Subjects: Representation in Legal Documents and Ethical Guidelines

scientific article published in November 2015

Motivations for people with cognitive impairment to complete an advance research directive - a qualitative interview study

scientific article published on 08 July 2020

National Standards for Public Involvement in Research: missing the forest for the trees

scientific article published on 18 October 2018

One For All, All For One? Collective Representation in Healthcare Policy

scientific article published on 01 September 2018

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

article

Patient Representation: Mind the Gap Between Individual and Collective Claims

scientific article published on 01 May 2020

Public involvement in the governance of population-level biomedical research: unresolved questions and future directions

scientific article published on 06 October 2020

Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study

scientific article published on 19 November 2020

Representing autism: Challenges of collective representation in German and Israeli associations for and of autistic people.

scientific article published on 25 January 2018

Return to childhood? Against the infantilization of people with dementia

scientific article published on 14 August 2018

SERIES: eHealth in primary care. Part 2: Exploring the ethical implications of its application in primary care practice

scientific article published on 30 October 2019

Scrutinizing Privacy in Multi-Omics Research: How to Provide Ethical Grounding for the Identification of Privacy-Relevant Data Properties

scientific article published in 2021

The Challenge of Demandingness in Citizen Science and Participatory Research

scientific article published on 01 August 2019

The ethics of genome editing in non-human animals: a systematic review of reasons reported in the academic literature

scientific article published on 01 May 2019

The implausibility of response shifts in dementia patients

scientific article published on 2 June 2016

The relevance of different trust models for representation in patient organizations: conceptual considerations