Bureaucracy and Beyond: The Impact of Ethics and Governance                     Procedures on Health Research in the Social Sciences

Reed, Kate

doi:10.5153/sro.1627

Cited by 21 publications

(24 citation statements)

References 8 publications

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“…6 6 For a full discussion on ethics procedures in health‐related research, refer to Reed K. (2007a). …”

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confidence: 99%

‘It's them faulty genes again’: women, men and the gendered nature of genetic responsibility in prenatal blood screening

Reed

2009

Sociology Health & Illness

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Prenatal blood tests are routinely offered to pregnant women in the UK. Male partners are tested only where a combined positive male and female test could detect fetal abnormality such as sickle cell anaemia. Little is known about the gendered nature of screening and the impact it has on lay feelings of genetic responsibility. For example, do women take exclusive 'maternal responsibility' for the fetus? How is this responsibility challenged when men are also screened? Drawing on empirical research with pregnant women and their male partners in a northern city in the UK, this paper aims to explore the gendered nature of genetic responsibility in prenatal blood screening. The paper will argue that women and men feel a sense of genetic responsibility for the fetus throughout screening. However, while women's sense of responsibility is directly 'embodied' and is heightened by the detection of 'faulty genes', men's manifests itself indirectly through shared responsibility with their pregnant partners and directly through their own genetic connections to the fetus. The paper concludes that the gendered nature of genetic responsibility is complex and contradictory, producing a set of gender roles that both challenges and reinforces a traditional gender division of labour.

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“…6 6 For a full discussion on ethics procedures in health‐related research, refer to Reed K. (2007a). …”

mentioning

confidence: 99%

‘It's them faulty genes again’: women, men and the gendered nature of genetic responsibility in prenatal blood screening

Reed

2009

Sociology Health & Illness

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“…This ethics creep (Haggerty 2004) operates using generalist ideas about ethics compliance rather than being more attuned to disciplinary ways of working and the specifics of particular research contexts (Webster 2006). The time-consuming (for the researcher) bureaucratisation of entirely routine social science research by drawing it into 'high risk' categories (Reed 2007, Hunter 2008 is not the only thing on the cards, for, as we noted earlier, elsewhere ethics creep has eventually extended to unfunded as well as funded research.…”

Section: Research Involving Groups Where Permission Of a Gatekeeper Imentioning

confidence: 99%

“…Reed (2007) comments about how researchers might 'manage' aspects of this, andWiles et al (2007; see also Crow et al 2006) suggest that researchers position themselves and their work somewhere between the more optimistic and more pessimistic views of ethics in relation to informed consent. While such discussions are helpful, we are more interested in collective ways of responding and protesting, as spelled out in section 6 of this paper.…”

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confidence: 99%

The ESRC's 2010 Framework for Research Ethics: Fit for Research Purpose?

Stanley

Wise

2010

Sociological Research Online

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The ESRC's (2010) Framework for Research Ethics extends the remit of its 2005 research ethics framework in three significant ways: the system is to be fully mandatory and it will no longer be possible to make the case that no out of the ordinary ethical issues arise; the Research Ethics Committees (RECs) set up under the ESRC's 2005 document have extended remit, including reviewing all research proposals accepted by the ESRC and other funding bodies; and funding will depend on the REC review, with its purview extending through a project's life. The 2010 document is reviewed in detail and the conclusion is drawn that it is not fit for purpose. Six wider issues raised by the FRE document are discussed: the consultation process by the ESRC was insufficient and the informed consent of the social science community was not obtained; the ethics creep involved will involve unnecessary bureaucratisation; the RECs will operate without expert discipline-specific knowledge using unethical generalist criteria; the overall effects long-term will be deleterious to the research base; the FRE document unacceptably ignores the professional associations and their research ethics guidelines; and the ESRC's system of the expert peer review of funding applications will be undermined.

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“…A key function of the HRA is the ethical review and approval of AHSR proposals. Critics suggest that members of research ethics committees (RECs) often review scientific aspects of research proposals, rather than their ethical implications [20], and that the increasing level of bureaucratization may undermine the competitive advantage of a publicly funded, open access health system for undertaking AHSR [21].…”

Section: Introductionmentioning

confidence: 99%

Learning from a Feasibility Trial of a Simple Intervention: Is Research a Barrier to Service Delivery, or is Service Delivery a Barrier to Research?

Frost¹,

Britten²

2020

Healthcare

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1) Background: Applied health services research (AHSR) relies upon coordination across multiple organizational boundaries. Our aim was to understand how competing organizational and professional goals enhance or impede the conduct of high quality AHSR. (2) Methods: A qualitative study was conducted in two local health care systems in the UK, linked to a feasibility trial of a clinic-based intervention in secondary care. Data collection involved 24 semi-structured interviews with research managers, clinical research staff, health professionals, and patients. (3) Results: This study required a dynamic network of interactions between heterogeneous health and social care stakeholders, each characterized by differing ways of organizing activities which constitute their core functions; cultures of collaboration and interaction and understanding of what research involves and how it contributes to patient care. These interrelated factors compounded the occupational and organizational boundaries that hindered communication and coordination. (4) Conclusions: Despite the strategic development of multiple organizations to foster inter-professional collaboration, the competing goals of research and clinical practice can impede the conduct of high quality AHSR. To remedy this requires the alignment and streamlining of organizational goals, so that all agencies involved in AHSR develop a shared understanding and mutual respect for the progress of evidence-based medicine and the complex and often nuanced environments in which it is created and practiced.

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Bureaucracy and Beyond: The Impact of Ethics and Governance Procedures on Health Research in the Social Sciences

Cited by 21 publications

References 8 publications

‘It's them faulty genes again’: women, men and the gendered nature of genetic responsibility in prenatal blood screening

‘It's them faulty genes again’: women, men and the gendered nature of genetic responsibility in prenatal blood screening

The ESRC's 2010 Framework for Research Ethics: Fit for Research Purpose?

Learning from a Feasibility Trial of a Simple Intervention: Is Research a Barrier to Service Delivery, or is Service Delivery a Barrier to Research?

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