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Ethical economic, legal and social aspects of screening

Diagnosis and Screening: Ethical, economic, legal and social aspects of screening

(Please also see ethical, social and legal implications of a genetic screening test)

Public and media attention can lead to undue pressure on policy makers to introduce a screening programme without considering the opportunity costs and harms such as those from false results. For this reason, the ethical, economic and social consequences should always be carefully considered prior to the introduction of a new screening programme. In the UK these aspects are largely overseen by the NSC (please also see section 3.7 on role of the UKNSC).

Ethical aspects

Beauchamp and Childress (2001) set out one of the most widely used frameworks in medical ethics. It consists of four principles, namely beneficence, non-malfeasance, justice and autonomy. Screening programmes have the potential to violate each of these. In the worst case scenario a false negative test result can lead to preventable death

Table 3.5.1 Ethical aspects of screening


Principle

Potential harm

Beneficence

  • All those screened are by definition symptom free but at some risk. Screening programmes may have large benefits at population level for those who can be offered early treatment but not every case will benefit

Non-malfeasance

  • Psychological harm from false positives in the interval before diagnostic testing

  • Preventable death resulting from false-negative test

  • Iatrogenic harm from the subsequent diagnostic test (which is often invasive)

  • Unwarranted reassurance from false-negatives (may cause people to belittle symptoms that develop later)

Justice

  • Screening programmes should be used only when all other primary preventive measures are in place (because primary prevention is likely to be more cost-effective than screening)

  • A challenge for screening programmes is to ensure equality in uptake and linkage into care pathways among deprived and affluent populations

Autonomy

  • Communicating risk to patients is notoriously difficult, and it is questionable whether people who partake in a screening programme truly understand the consequences of their participation (see informed choice section)

Economic aspects (Value for money)

Introducing and running a screening programme is expensive and associated with large numbers of people to be screened (including administrative costs) to find a small number of cases.  The opportunity cost of the screening programme (including testing, diagnosis and treatment, administration, training and quality assurance) should be economically balanced in relation to expenditure on medical care as a whole. Economic evaluations should be subject to sensitivity analysis and discounting.

Table 3.5.2 Legal aspects of screening


Test license and safety

The employed screening test needs to be licensed and safety approved by a statutory body

Qualification and Accreditation

To assure standards, diagnosticians involved in processing the test must be qualified, registered and accredited by a statutory body. To retain their accreditation, they must deal with a minimum

number of abnormal cases each year

Confidentiality

Individual level information collected though screening must be kept confidential to authorized personnel only and managed in accordance with Caldecott Guidelines

The right NOT to be screened

For certain diagnoses (e.g. genetic screening for Huntington's

disease), the right of children not to be screened may be protected

in law. Likewise, the law offers protection to prisoners and to people with learning difficulties against coercion into screening programmes. The should be no discrimination of non-participants

Consent

Documentation of consent to be screened maybe necessary in writing (see informed choice)

Social aspects of screening

Health beliefs and attitudes are important influences in participation in screening, but may vary significantly between target population subgroups. These need be considered in the planning and monitoring stage in order to ensure that any new screening programme does not exacerbate health inequalities, e.g. between social classes or between different ethnic groups.

Table 3.5.3 Social aspects


Factors that may increase participation in screening

Factors that may decrease participation in screening

Knowledge of condition

Disease phobia

Perception of susceptibility

Stigma associated with condition

Perception of disease severity

Unpleasant diagnostic tests and treatment

Knowledge of availability of treatment

Socio-economic factors (e.g. income, education, deprivation, employment)

 

Socio-demographic factors (age, sex, ethnicity, language, creed)

 

Accessibility of screening sites

Reference materials

  • Principles of Biomedical Ethics, 5th edn. , Beauchamp T L, Childress J F. Oxford University Press, 2001

  • 'Mastering Public Health: A postgraduate guide to examinations and revalidation. Lewis GH, Sheringham J, Kalim K, Crayford, TJB. London: Royal Society of Medicine Press Ltd; 2008

© Dr Murad Ruf and Dr Oliver Morgan 2008