Does the pragmatic model undermine the importance of the ethical obligations involved in information process? A defence of continuous genetic counselling for research participants.

HOLZER, FELICITAS; MASTROLEO, IGNACIO

JOURNAL OF MEDICAL ETHICS.

B M J PUBLISHING GROUP

Lugar: Londres; Año: 2014

0306-6800

[eLetter in response to Nina Hallowell, Alison Hall, Corinna Alberg, Ron Zimmern "Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issues" J Med Ethics medethics-2013-101996Published Online First: 18 July 2014 doi:10.1136/medethics-2013-101996] Hallowell et al. advocate an interesting pragmatic approach to the disclosure of genetic information in research settings. Furthermore, they present a useful framework which explicitly addresses advantages and disadvantages linked to different feedback policies researchers could pursue (Hallowell et al. 2014, table 1). We agree with the authors that the feedback of findings from whole- genome sequencing (WGS) or whole-exome sequencing (WES) technologies cannot be considered as automated processes of data disclosure. Since we have to take into account the research participant´s autonomy as well as the prevention of possible harms related to the disclosure of genetic information, feedback policies have to be carefully chosen and thought over. However, more freedom to choose feedback options is not necessarily related to a more autonomous choice of the participant as Hallowell et al. pragmatic model seems to imply.