Respecting and fulfilling the right of post-primary pupils to consent to participate in trials and evaluative research: A discussion paper

This paper provides an introduction to issues surrounding the participation rights of young people in research and the implications of their growing involvement in research as well as providing a discourse on the ethical implications related to consent. The unique contribution of this paper is that it considers children’s rights in respect to the increasing opportunities for young people to take part in evaluation research. The aim of this paper, therefore, is to acknowledge the growing involvement for young people in research and the implications of ensuring that their rights of participation are respected. Secondly we will consider the children’s rights legislation and our obligations as researchers to implement this. Finally we will explore consent as an issue in its own right as well as the practicalities of accessing participants. This paper will postulate that any research about young people should involve and prioritise at all stages of the research process; including participation in decision-making. We conclude by identifying five key principles, which we believe can help to facilitate the fulfilment of post-primary pupils’ ability to consent to participate in trials and evaluative research.

Lawyers & Truth Recovery Mechanisms: South Africa

Focusing on post-apartheid South Africa, the report explores the role of lawyers in truth recovery mechanisms.

The report was prepared by Dr Rachel Killean and draws on a series of interviews conducted in South Africa (with legal academics, ‘struggle’ lawyers, state lawyers, judges and human rights activists) as part of the wider Lawyers, Conflict and Transition project.

Dr Killean begins with an overview of the various roles the legal profession has played in South Africa, both during the apartheid era and post-transition.

The first half of the report then explores the role of lawyers as professional participants – firstly at the South African Truth and Reconciliation Commission and secondly in the Marikana Commission of Inquiry.

The report then considers the notion of lawyers as subjects of truth recovery, looking in particular at the Special Legal Hearing on the legal profession as part of the South African Truth and Reconciliation Commission.

In the concluding section Killean reflects on the extent to which lawyers influence the procedures and outcomes of truth recovery mechanisms and offers some concrete suggestions as to how the involvement of lawyers in such processes might be more effectively managed.

With regard to lawyers as subjects of truth recovery, she acknowledges the limitations of the South African model but posits that the endeavour must be applauded, not least because it demonstrated that it is possible to scrutinise the role of the legal profession in past conflict, and that it is worth wrestling with the associated challenges.

Use of an employment advisory service by cancer survivors

Employment issues for cancer survivors (CS) were investigated fromthe perspective of Northern Ireland government general employmentadvisors. An e-survey was designed and developed based on the resultsof a scoping search of journal articles, previously validatedquestionnaires and relevant related surveys; discussions of draftversions of the e-survey and method with lead representatives ofstakeholder organizations; and a pilot study with seven prospectiverespondents. The e-survey and subsequent reminder to employmentadvisors were distributed internally by the government employmentadvisory agency. The e-survey was completed by 78/156 (50%) advisors,the majority of whom (74%) received a request for advicein the last year from at least one CS. Most CS used the employmentservice less than 1 year (52%) or 1 year or more after treatment(32%). Fatigue was the most commonly reported barrier to returningto work (10%) and staying in work (14%), and a supportiveemployer was the top facilitating factor in returning to (21%) andcontinuing in (27%), employment. Although most advisors had apositive attitude about a CS’s capacity to return to work, half wereuncertain about how best to advise cancer survivors.