Rare Disease Patient and Ethics Council (RD-PEC)

Broad issues of interest

Secondly, the PEC can give opinion on broad issues of interest which

arise through the developments undertaken by EURenOmics, Neuromics

and RD Connect. PEC members have so far commented on the Data

Sharing Charter which regulates data and materials sharing for the three

projects.

Rare Disease Patient and Ethics Council – RD-PEC

The PEC (pronounced pek) is a forum for members of the Ethics Committees of RD Connect,

Neuromics, EURenOmics and members of the Patient Advisory Council to collaborate on

examining ethical and social issues arising out of the work of the three projects. The PEC is a

voluntary, multidisciplinary group which forms part of the governance of RD Connect.

Membership of the PEC by role http://rd-connect.eu/platform/ethics/rd-pec/ 

Conclusions

New approaches to health technologies, such as those being explored in

RD Connect, Neuromics and EURenOmics can raise issues that are not

fully covered by existing ethical guidelines. The PEC helps to provide the

institutional capacity to identify, clarify and evaluate emerging ethical

tensions in their practical contexts. In addition it allows the inclusion of

patient perspectives in these interdisciplinary debates.

Operational aspects

Specific questions and answers

Firstly the PEC provides a publicly available question and answer forum

where anyone with an ethical, social or legal query concerning the work

of EURenOmics, Neuromics and RD Connect can submit their question.

These will be debated by the PEC members and a summary, consensus

answer will be made available on the PEC website.

PEC Members

Jean-Jacques Cassiman; Megan Fookes; Emma Heslop; Joseph

Irwin; Anna Kole; Chantal Loirat; Milan Macek; Deborah

Mascalzoni; Pauline McCormack (chair); Caron Molster; Marita

Pohlschmidt; Daniel Renault; Peter Reussner; Balthasar Schaap;

Inge Schwersenz; Volker Straub; Johanne van Delden; Marieke

van Meel; Urban Weising; Simon Woods

patient representa-tive

clinician

scientist

bioethicist

sociologist

lawyer

Pauline McCormack, Policy, Ethics & Life Sciences Research Centre, Newcastle University, on behalf of the Patient and Ethics Council

pauline.mccormack@ncl.ac.uk

@paulinemacco

PEC online question form

can be found at

Ethics workshop at Sitges

Background and rationale

Based on best practice from similar large RD networking projects, the PEC

aims to be a reactive and responsive resource which can examine

contemporary, pragmatic, sometimes urgent issues around the ethics of

research and focus on useful, problem solving for patient groups,

researchers and clinicians. It will encourage a bottom-up approach,

generating knowledge triggered by empirical questions, with relevant

results publicly available through the RD Connect website.

Rather than being a source of formal or technical guidance on points of

law, regulation and governance, the PEC will take a deliberative, reflexive

approach to questions posed.

Meetings/reporting

The PEC meets face to face

at the annual joint meetings of

the three projects and reports

its activities to the EC every

12 months.