Ethics education for clinician–researchers in genetics: The combined approach

Abstract

Advancements in genomic technology and genetic research have uncovered new and unforeseen ethical and legal issues that must now be faced by clinician–researchers. However, lack of adequate ethical training places clinician–researchers in a position where they might be unable to effectively assess and resolve the issues presented to them. The literature demonstrates that ethics education is relevant and engaging where it is targeted to the level and context of the learners, and it includes real-world based cases approached in innovative ways. In order to test the feasibility of a combined approach to ethics education, a conference was held in 2012 to raise awareness and familiarize participants with the ethical and legal issues surrounding medical technology in genetics and then to have them apply this to reality-based case studies. The conference included participants from a variety of backgrounds and was divided into three sections: (i) informative presentations by experts in the field; (ii) mock REB deliberations; and (iii) a second mock-REB, conducted by a panel of experts. Feedback from participants was positive and indicated that they felt the learning objectives had been met and that the material was presented in a clear and organized fashion. Although only an example of the combined approach in a particular setting, the success of this conference suggests that combining small group learning, practical cases, role-play and interdisciplinary learning provides a positive experience and is an effective approach to ethics education.

Genomic Literacy and Awareness of Ethical Guidance for Genomic Research in Sub-Saharan Africa: How Prepared Are Biomedical Researchers?

“…Advancements in genomic technology have produced ethical issues that must be addressed by researchers. Lack of adequate ethics training and preparedness places researchers in a position where they might be unable to effectively assess and resolve the ethical dilemmas presented to them (Zawati, Cohen, Parry, Avard, & Syncox, 2015). This might result in the unethical conduct of research.…”

Privacidad y confidencialidad de los datos genéticos y genómicos de uso diagnóstico en Colombia

“…No obstante, la marcada evolución en las técnicas de análisis e interpretación en el estudio del genoma humano ha generado, de forma continua, discusiones vigorosas sobre cómo manejar esta información debido a que la genética, tanto clínica como investigativa, lleva consigo numerosas implicaciones legales, principalmente relacionadas con los subproductos que resultan a partir de su análisis. Por tanto, se han planteado consideraciones acerca de la privacidad de los datos genéticos a nivel legal, con el fin de prevenir la discriminación y de brindar las condiciones de asesoramiento adecuado para el diagnóstico y el tratamiento, como en cuestiones de comercialización, patentes, biobancos y la manipulación genética inadecuada o las mutaciones ilegales de la línea germinal [5,6,14].…”