35 research outputs found
Written consent and reproductive autonomy in the context of prenatal screening
Le test prénatal non invasif (TPNI) est une technique de dépistage prénatal qui ne présente pas
de risque accru de fausse couche, peut ĂȘtre effectuĂ© plus tĂŽt dans la grossesse et est plus prĂ©cis que
les technologies existantes. Cependant, ces avantages peuvent contribuer Ă lâĂ©rosion de
lâautonomie reproductive. Entre 2013 et 2017, une Ă©tude intitulĂ©e PEGASE a Ă©tĂ© menĂ©e, validant
les performances et l'utilitĂ© du TPNI, ainsi quâanalysant les implications Ă©conomiques, Ă©thiques,
juridiques et sociales de la technologie. Le prĂ©sent mĂ©moire est basĂ© sur les donnĂ©es dâune enquĂȘte
auprÚs des professionnels de santé (N = 184).
Ce mémoire aborde la relation entre les attitudes des professionnels de santé concernant a) le
"consentement éclairé" et b) le "consentement écrit" dans le contexte du TPNI. Il remet en question
le récit établi dans la littérature, que les professionnels qui croient que le consentement écrit pour
le TPNI n'est pas important croient également que les procédures de consentement pour le TPNI
«devraient devenir moins rigoureuses» (1).
Les données montrent que ce sont les professionnels qui se soucient de l'autonomie qui doutent
de l'importance du consentement écrit. Cela contredit le récit cité ci-dessus. Les opinions des
professionnels sur le «consentement Ă©crit» ne peuvent donc pas ĂȘtre utilisĂ©es pour infĂ©rer leurs
opinions sur lâimportance du «consentement Ă©clairé». Il est recommandĂ© dâenquĂȘter les
professionnels de la santé sur des considérations particuliÚres liées à la pratique, telles que celles
enquĂȘtĂ©es dans cette Ă©tude, plutĂŽt que dâinterroger les rĂ©pondants sur des concepts acadĂ©miques
tels le «consentement» ou lâ«autonomie».Non-Invasive Prenatal Testing (NIPT) is a new generation of prenatal screening that poses no
increased risk of miscarriage, can be performed earlier in the pregnancy, and is more accurate than
previously existing technologies. These advantages, however, potentially contribute to eroding
reproductive autonomy, already under threat from other screening methods. Between 2013 and
2017, a study titled PEGASUS was conducted, validating the performance and utility of NIPT, as
well as studying the economic, ethical, legal and social implications of the technology. One of
these activities was a series of surveys conducted throughout Canada in 2015-16. The present
thesis is based on the data from the healthcare professionalsâ survey (N=184).
This thesis addresses the relationship between healthcare professionalsâ beliefs regarding a)
âinformed consentâ and b) âwritten consentâ in the context of NIPT. It questions the established
narrative in the bioethics literature, that professionals who believe written consent for NIPT is not
important also believe consent procedures for NIPT âshould become less rigorousâ than those used
for invasive prenatal testing (1).
Data from the survey shows that it is precisely those professionals who care about reproductive
autonomy considerations who doubt the importance of written consent for NIPT. This directly
contradicts the narrative cited above. Professionalsâ stated views on âwritten consentâ thus cannot
be used to infer their unstated views on the importance of âinformed consentâ. It is recommended
to investigate particular practice-based considerations such as the ones in this study rather than
querying survey respondents on scholarly concepts such as âconsentâ or âautonomyâ
Responsible Conduct of Research in Research-Creation: Moving into Uncharted Terrain
Responsible conduct of research (RCR) is ubiquitous, and present in most areas of research. One area that has received little attention is Research-Creation (RC):
âą an emergent eld at the interface of academic research
and creative activities
âą in Quebec, Canada, RC is de ned as âresearch activities or
approaches that foster the creation or interpretation/
performance of literary or artistic works of all typesâ
Researcher-Creators â who are at the same time researchers and practising artists, musicians, or designers â may be faced with very di erent issues or challenges from colleagues in the rest of academia.
âą How do researcher-creators reconcile their dual obligations to creation and to research?
âą Are the usual research ethics guidelines (e.g., TCPS2, ICH relevant and how do they apply?
âą How do the creative/artistic dimensions of research a ect evaluations by grant committees and REBs?
To better understand how RCR issues are articulated in the very heterogeneous RC community, we combine here results from a literature review and an international survey on RCR in RC.FRQ Action concerté
Mitochondrial/Nuclear Transfer: A Literature Review of the Ethical, Legal and Social Issues
Mitochondrial/nuclear transfer (M/NT) to avoid the transmission of serious mitochondrial disease raises complex and challenging ethical, legal and social issues (ELSI). In February 2015, the United Kingdom became the first country in the world to legalize M/NT, making the heated debate surrounding this technology even more relevant. This critical interpretive review identified 95 relevant papers discussing the ELSI of M/NT, including original research articles, government-commissioned reports, editorials, letters to editors and research news. The review presents and synthesizes the arguments present in the literature in relation to the most commonly raised themes: terminology; identity, relationships and parenthood; potential harm; reproductive autonomy; available alternatives; consent; impact on specific interest groups; resources; âslippery slopeâ; creation, use and destruction of human embryos; and beneficence. The review concludes by identifying those ELSI that are specific to M/NT and by calling for follow-up longitudinal clinical and psychosocial research in order to equip future ELSI debate with empirical evidence
Early-career researchersâ views on ethical dimensions of patient engagement in research
Abstract Background Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER. Methods A three-round Delphi survey was conducted with a panel of early-career researchers (ECRs) involved in PER. One of the objectives was to examine the ethical dimensions of PER as well as ECRsâ self-perceived level of preparedness to conduct PER ethically. The study was conducted among awardees of the QuĂ©bec SPOR-SUPPORT Unit in Canada, who represent the next generation of researchers involved in PER. Many themes were addressed throughout the study, such as definition, values, patientsâ roles, expected characteristics of patients, and anticipated challenges (including ethical issues). Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales. Results Between April and November 2016, 25 ECRs were invited to participate; 18 completed both the first and second rounds, and 16 completed the third round. Panelists consisted of nine women and seven men with various backgrounds (general practitioners and postgraduate students). The majority were between 25 and 44 years old. Panelistsâ responses showed PER raises important ethical issues: 1) professionalization of patients involved in research (with risks of patients becoming less representative); 2) adequate remuneration of patients; 3) fair recognition of patientsâ experiential knowledge; and 4) tokenism (engaging patients only for symbolic appeal). While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project. Conclusion If PER is an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Despite their overall readiness to conduct PER, panelists did not feel adequately prepared to address many of these issues. It is not easy for ECRs to reconcile ethical desiderata and logistical imperatives. Additional research should focus on supporting the responsible conduct of PER, which, if not done, can undermine the credibility and feasibility of the entire PER enterprise
A Delphi Technology Foresight Study: Mapping Social Construction of Scientific Evidence on Metagenomics Tests for Water Safety
Access to clean water is a grand challenge in the 21st century. Water safety testing for pathogens currently depends on surrogate measures such as fecal indicator bacteria (e.g., E. coli). Metagenomics concerns high-throughput, culture-independent, unbiased shotgun sequencing of DNA from environmental samples that might transform water safety by detecting waterborne pathogens directly instead of their surrogates. Yet emerging innovations such as metagenomics are often fiercely contested. Innovations are subject to shaping/construction not only by technology but also social systems/values in which they are embedded, such as expertsâ attitudes towards new scientific evidence. We conducted a classic three-round Delphi survey, comprised of 107 questions. A multidisciplinary expert panel (n = 24) representing the continuum of discovery scientists and policymakers evaluated the emergence of metagenomics tests. To the best of our knowledge, we report here the first Delphi foresight study of expertsâ attitudes on (1) the top 10 priority evidentiary criteria for adoption of metagenomics tests for water safety, (2) the specific issues critical to governance of metagenomics innovation trajectory where there is consensus or dissensus among experts, (3) the anticipated time lapse from discovery to practice of metagenomics tests, and (4) the role and timing of public engagement in development of metagenomics tests. The ability of a test to distinguish between harmful and benign waterborne organisms, analytical/clinical sensitivity, and reproducibility were the top three evidentiary criteria for adoption of metagenomics. Experts agree that metagenomic testing will provide novel information but there is dissensus on whether metagenomics will replace the current water safety testing methods or impact the public health end points (e.g., reduction in boil water advisories). Interestingly, experts view the publics relevant in a âdownstream capacityâ for adoption of metagenomics rather than a co-productionist role at the âupstreamâ scientific design stage of metagenomics tests. In summary, these findings offer strategic foresight to govern metagenomics innovations symmetrically: by identifying areas where acceleration (e.g., consensus areas) and deceleration/reconsideration (e.g., dissensus areas) of the innovation trajectory might be warranted. Additionally, we show how scientific evidence is subject to potential social construction by expertsâ value systems and the need for greater upstream public engagement on metagenomics innovations
Mitochondrial/Nuclear Transfer: A Literature Review of the Ethical, Legal and Social Issues
Mitochondrial/nuclear transfer (M/NT) to avoid the transmission of serious mitochondrial disease raises complex and challenging ethical, legal and social issues (ELSI). In February 2015, the United Kingdom became the first country in the world to legalize M/NT, making the heated debate surrounding this technology even more relevant. This critical interpretive review identified 95 relevant papers discussing the ELSI of M/NT, including original research articles, government-commissioned reports, editorials, letters to editors and research news. The review presents and synthesizes the arguments present in the literature in relation to the most commonly raised themes: terminology; identity, relationships and parenthood; potential harm; reproductive autonomy; available alternatives; consent; impact on specific interest groups; resources; âslippery slopeâ; creation, use and destruction of human embryos; and beneficence. The review concludes by identifying those ELSI that are specific to M/NT and by calling for follow-up longitudinal clinical and psychosocial research in order to equip future ELSI debate with empirical evidence.Le transfert mitochondrial / nuclĂ©aire (M/NT) visant Ă Ă©viter la transmission de maladies mitochondriales graves soulĂšve des enjeux Ă©thiques, juridiques et sociaux (ELS) complexes. En fĂ©vrier 2015, le Royaume-Uni est devenu le premier pays au monde Ă lĂ©galiser le M/NT, rendant le dĂ©bat houleux sur cette technologie encore plus pertinent. Cette revue dâinterprĂ©tation critique identifie 95 articles pertinents sur les enjeux ELS du M/NT, y compris des articles de recherche originaux, des rapports gouvernementaux ou commandĂ©s par le gouvernement, des Ă©ditoriaux, des lettres aux Ă©diteurs et des nouvelles de recherche. La revue prĂ©sente et synthĂ©tise les arguments prĂ©sents dans la littĂ©rature quant aux thĂšmes les plus frĂ©quemment soulevĂ©s: terminologie; identitĂ©, relations et parentalitĂ©; dommage potentiel; autonomie reproductive; alternatives disponibles; consentement; impact sur des groupes dâintĂ©rĂȘt spĂ©cifiques; ressources; « pente glissante »; crĂ©ation, utilisation et destruction des embryons humains; et bienfaisance. La revue conclut en identifiant les enjeux ELS spĂ©cifiques au M/NT et en appelant Ă une recherche de suivi longitudinale clinique et psychosociale afin dâalimenter le futur dĂ©bat sur les enjeux ELS de preuves empiriques
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Radar chart for Delphi survey round 2 and round 3 responses.
<p>Distribution of the standard deviations for each of the 107 Delphi survey questions (from 1 to 107, in the clockwise direction) in round 2 (<i>blue line</i>) and round 3 (<i>red line</i>). Note that the distribution of the standard deviations across the 107 survey questions is dampened in round 3 (<i>red line</i>) as anticipated in Delphi surveys.</p
RANK ORDER of the <i>Dependency</i> of Consensus Indicesâ on the GROUP CONFORMITY INDEX in a Delphi Survey
<p>*The dependency value ranges from 0.000 to 1.000. A value of â0.000â shows complete independence of the Consensus Index from the Delphi survey characteristic examined (e.g., the Group Conformity Index) whereas a value of â1.000â shows complete dependence. The dependency value is the maximum numeric difference observed for each consensus index when the Group Conformity Index in a simulated Delphi survey varied from 0.0 to 1.0.</p><p>All Delphi consensus indices (the <i>left column</i>) typically take a value ranging from 0.000 to 1.000, except the Interquartile Range (IQR). For example, in the case of the Fleissâ Kappa, a maximum difference of 0.504 can be anticipated when the Group Conformity Index varies from 0.0 to 1.0. For the IQR, the dependency data are normalized by dividing the difference observed in simulations by the maximum possible difference (9.000), i.e., the length of the Likert scale from 1 to 10 used in the simulations.</p><p>RANK ORDER of the <i>Dependency</i> of Consensus Indicesâ on the GROUP CONFORMITY INDEX in a Delphi Survey</p