PubMed Health⌕ Search

Biomedical subjects

Darren Shickle

Publications and source records attributed to Darren Shickle.

5 recordsLinked to original sources

The consent problem within DNA biobanks.

Large prospective biobanks are being established containing DNA, lifestyle and health information in order to study the relationship between diseases, genes and environment. Informed consent is a central component of research ethics protection. Disclosure of information about the research is an essential element of seeking informed consent. Within biobanks, it is not possible at recruitment to describe in detail the information that will subsequently be collected because people will not know which disease they will develop. It will also be difficult to describe the specific research that will be performed using the biobank, other than to stipulate categories of research or diseases that are not included. Potential subjects can only be given information about the sorts of research that will be performed and by whom. Organisations responsible for biobanks usually argue that this disclosure of information is adequate when seeking informed consent, especially if coupled with a right to withdraw, as it would not be feasible or it would be too expensive to seek consent renewal on a regular basis. However, there are concerns about this 'blanket consent' approach'. Consent waivers have also been proposed in which research subjects entrust their consent with an independent third party to decide whether subsequent research using the biobank is consistent with the original consent provided by the subject.

Adult↗

The genetics liaison nurse role as a means of educating and supporting primary care professionals.

BACKGROUND: Previous research with primary health care professionals has demonstrated consistently that education, training and support are necessary before there should be any expansion in primary care genetics. The genetic liaison nurse role has been suggested as one means of providing this education and support. OBJECTIVE: The aim of this study was to evaluate GP responses to the genetics liaison nurse role as a means of supporting community-based genetics services. METHODS: A self-completion postal questionnaire in primary care was sent to GPs working in Nottingham. Main outcome measures were assessment of potential usage of a genetic outreach professional in terms of time, roles and support for a pilot scheme RESULTS: A total of 182 (55.0%) of 331 GPs working in Nottingham returned a questionnaire. Although 54% did not believe that the genetics liaison nurse role would be useful in the present, most believed that such a role would definitely or probably (64%) be useful in the future. The most valued contribution was as a source of advice when genetics problems arise in a consultation. Providing education on specific genetic disorders and on clinical skills relevant to genetics were also seen as important. Many GPs would also use a liaison nurse to see patients prior to their attending an out-patient clinic with a clinical geneticist. Respondents suggested that each nurse should spend approximately 3 hours a month in each practice and be attached to between 10 and 20 practices. CONCLUSIONS: GPs appreciate that there may be limited genetics services provided in primary care at present, but this is likely to change in the near future. The genetics liaison nurse role should be evaluated as a means of providing genetics specialist outreach support for service delivery and to facilitate education.

Attitude of Health Personnel↗

Public preferences for health care: prioritisation in the United Kingdom.

The Government in the UK is encouraging consumerism within health care and is requiring Health Authorities to consult with the public on prioritisation of resources. Public consultation within the National Health Service (NHS) has had limited success in the past. Many of the techniques used are flawed. Despite the limited scope of the public surveys conducted so far, a number of themes have emerged: a willingness to pay for experimental, 'high-tech' life-saving treatments rather than more cost-effective treatments which will improve quality of life, which are more likely to maximise utility from the scarce resources available; preference for treating the young rather than the old; preference for treating patients with dependents (e.g. spouse, children) rather than those who have none; a willingness to discriminate against those patients who were partially responsible for their illness due to choice of 'unhealthy' lifestyle (e.g. smoking cigarettes, drinking excess alcohol). These public preferences raise ethical problems. For example, is it just to spend more on heroic treatments which are likely to fail? Is there a right to health care irrespective of whether you have had 'a fair innings' or whether a patient is in part responsible for their illness due to an unhealthy lifestyle? If there are ethical concerns about these preferences, should health authorities consult with the public at all? Is human life and suffering incommensurable, and hence is it impossible to prioritise anyway? Some of the ethical consequences of using empirical data on public preferences are discussed.

Age Factors↗

The Mental Capacity Act 2005.

The Mental Capacity Act 2005 covers all decisions on personal welfare including financial matters, relating to people who temporarily or permanently lack mental capacity. This paper outlines the most important provisions of the Act and describes some of the implications for healthcare professionals. For example, the Act permits advance decisions to refuse healthcare; the appointment of a person to have a Lasting Power of Attorney to act on a person's behalf at some point in the future; the appointment of a court-appointed deputy to act on behalf of a person lacking mental capacity; and research involving people who lack mental capacity in specific circumstances. The Court of Protection will now have a role in resolving difficult ethical problems in clinical cases.

Advance Directives↗