Do you have ethical concerns or issues related to your research that you would like to share and discuss with readers of ‘Palliative Medicine’? Sandra Martins Pereira and Pablo Hernández-Marrero introduce the latest virtual issue of the journal and welcome future submissions.
Research ethics is an area of expanding interest. It focuses on the ethical issues that may occur when people are involved as research participants. Its main goal is to protect human participants (particularly the most vulnerable), to ensure that research is conducted in a way that serves interests of individuals/groups/society, and to scrutinize research activities and projects for their ethical soundness. In order to pursue this goal, several ethical frameworks and guidelines were developed to address the ethical features of research, namely: the Nuremberg Code,the Declaration of Helsinki, The Council for International Organizations of Medical Sciences(CIOMS) guidelines, the Charter of Fundamental Rights of the European Union, and the European Convention on Human Rights.
Vulnerability is a touchstone in bioethics and a frequent common denominator in research ethics. Patients with palliative care needs often exhibit at least one, or several, types of vulnerability (e.g., cognitive, situational, medical, allocational, social, and deferential). While this can raise several ethical, legal, social, cultural and political concerns and calls for protection, it should not prevent research participation. In fact, excluding vulnerable patients from participating in relevant research could suggest that society is failing in its obligation to improve high-quality, evidence-based healthcare due to misguided paternalism.
Research needs to be both methodologically and ethically sound. Therefore, the aforementioned ethical frameworks and guidelines constitute relevant aids to guide researchers, ethics committees and editorial boards. Nevertheless, themere existence of these documents is not enough to ensure that research is ethically sound. To be so, researchers need to acquire the knowledge expressed in their content, integrate their inherent principles, translate them into everyday research practices, and become critically competent to mobilize them when facing ethical issues and challenges directly relevant to their research.
Research ethics has been a hallmark in Palliative Medicine. From the early 90s until now, several articles in Palliative Medicine have focused on issues related to research ethics in palliative care in successful attempts to discuss ethical issues while fostering palliative care research. It is worth mentioning that, in 2001, an editorial highlighted the decision of the editorial board to require all authors to provide a statement outlining how the ethical issues of the studies had been addressed. At the time, this was novel. Now, the requirement remains, together with the need to challenge ourselves. We should go beyond the mandatory statement of ethics approval.
Recent articles on research ethics have contributed to ongoing ethical debates, developing recommendations, exploring reasons for gate-keeping, reflecting on the dying persons’ perspectives and experiences in palliative care research,and even highlighting the deeply ethical practice inherent in palliative care.
These articles are now collated in a virtual issue on ‘research ethics in palliative care’ and illustrate the importance that research ethics occupies in Palliative Medicine. By bringing them together, we hope to contribute to the development of ethically sound palliative care research.
Do you have ethical concerns or issues related to your research that you would like to share and discuss with our readers? We look forward to hearing your thoughts and receiving your submissions. (You can contact us at the links below). Who knows? Perhaps, your article on research ethics in palliative care may become one of the ‘Editor’s choice’ posts for the EAPC blog in 2019!
More about the authors …
Sandra Martins Pereira is a Screening Editor on the Board of Palliative Medicine. Sandra works as a Senior Researcher and Invited Lecturer at the Institute of Bioethics, Universidade Católica Portuguesa. Contact Sandra by email and follow her on Twitter: @SandraMartinsP2
Pablo Hernández-Marrero is a Senior Researcher and Invited Lecturer at the Institute of Bioethics, Universidade Católica Portuguesa. Contact Pablo by email.
View the Virtual Issue on ‘research ethics in palliative care’ here.
Did you know … Palliative Medicine has a specific section of Virtual Issues, which can be accessed free of charge?
Palliative Medicine virtual collections serve to identify and group key publications in Palliative Medicine about contemporary issues to enable readers to quickly access key reading on a topic, and learn about the landscape for future research in this area. If you have any ideas for a new virtual issue, please email Professor Catherine Walshe, editor-in-chief, and Assistant Professor Judith Rietjens for further information.
All virtual issues can be found at the bottom of the Palliative Medicine web page.