Working Group to Address the needs of those potentially exposed to a blood-borne virus

First Report

Advice to the Scottish Executive on mandatory blood testing

This document is also available in pdf format (775kb)

Introduction

1. The Scottish Executive's February 2005 consultation document, Blood testing following criminal incidents where there is a risk of infection (BTFCI), proposed legislation to allow those potentially exposed to a blood-borne virus as a result of a crime committed by the suspected source of the infection, to apply to a civil court for a mandatory blood testing Order. Such an Order would require the suspected source to provide a blood sample (or allow access to their medical records) to reveal whether they were infected with HIV, hepatitis B or hepatitis C.

2. A number of arguments for and against this proposal were made in responses to the consultation. Accordingly, the Justice Minister established a Working Group under my chairmanship to consider these arguments and other aspects of the issue. This report presents our conclusions on the question of mandatory blood testing, following our first three meetings in Autumn 2005.

Remit of the Working Group

3. Our remit was as follows:

3.1 By November 2005, to review the arguments for and against the proposals in the Executive's consultation document on Blood testing following criminal incidents where there is a risk of infection, and to advise whether legislative change would be appropriate;

3.2 To identify existing best practice in protecting front-line workers and victims of crime from blood-borne viral infections and from anxiety about them, and to recommend any changes necessary to ensure high quality care is available to different groups, focussing in particular on occupational health services and their links with the NHS, as well as the care which is available to other (ie civilian) groups of victims through the NHS;

3.3 To advise what additional guidance should be issued to groups who may face risks of blood-borne viral infection in occupational settings.

4. This report fulfils the first part of our remit. Our second and final report will in due course address the remaining two aspects.

Conclusion and recommendations

5. The Working Group believes that the care given to police officers and others who have potentially been exposed to body fluids is not currently satisfactory. The psychological trauma experienced by police officers should largely be avoidable. But there is no agreed standard for care and there appears to be a wide disparity in the care being given. We will make specific recommendations on these matters in our second report.

6. However, at the current time there is a lack of hard evidence on whether a system of mandatory blood testing, as proposed in BTFCI, would bring significant benefits for those potentially exposed to blood-borne viruses. In particular, we have noted the advice from Health Protection Scotland [1] that the proposed legislation "would not reduce the risk" of actual transmission of HIV, hepatitis B or hepatitis C. Moreover, it is not clear to what extent the psychological trauma suffered by some in this position can be minimised by other methods, and whether mandatory testing would add significantly to that improvement. Nor is it known whether a greater number of consents to testing would be secured by mandatory testing or by more effective use of the current voluntary system.

7. In this context, the Working Group has unanimously agreed that:

• The next steps should be (a) to focus on improving pre-and post-incident care provided by occupational health services and the NHS - which will be the subject of our second report; and (b) to commission a project to evaluate how incidents are managed, including the issues in paragraph 6 above.
• Legislation for mandatory testing should not be pursued at the present time. But the question of mandatory testing should be reviewed in 2 years' time in the light of (a) the improved standards of care which can be put in place, and (b) police officers' (and others') experience of the care given them following exposure to body fluids, as identified by the recommended project.

Initial Observations on the proposals in the consultation paper

8. The Executive's consultation document was a response to the Scottish Police Federation's 2002 petition to the Scottish Parliament, which asked for legislation to make it compulsory for assailants and others who have caused police officers to be exposed, or potentially exposed, to the risk of blood-borne viral infection, to submit to a blood test, so that the officer concerned could be informed as soon as possible of the results of tests for hepatitis B, hepatitis C and HIV.

9. Both our remit and the earlier consultation document focussed on the risks to those who may face possible exposure to a blood-borne virus as a victim of crime and/or as a front-line worker. Much of our debate has focussed on police officers and staff, given that the issue was originally raised in a petition by the Scottish Police Federation. However, we have also had regard to the position of other front-line workers and victims of crime, including rape victims.

10. We unequivocally and unanimously acknowledge the seriousness of this issue. Being a victim of assault is a traumatic experience. Fear of being exposed to a blood-borne virus can add substantially to a victim's distress. In cases where they are advised to take post-exposure prophylaxis (PEP) to protect against a possible infection with HIV, adverse effects due to anti-retroviral drugs may be very unpleasant. The Scottish Police Federation has drawn attention to the accounts of a number of officers who have suffered considerable psychological trauma as a result of such incidents.

11. It is our unanimous view that the best possible care should be provided to all victims of crime in this position as well as to those individuals exposed through no fault of their own in the course of rendering assistance to others. However, the evidence of the consultation responses suggests that in fact, the standard of pre- and post- incident care is inconsistent. We attach the highest importance to identifying good practice and ensuring that it is followed across Scotland. Our recommendations on these issues will follow in our second report.

12. At the same time, we also recognise that the chances of getting infected with a blood-borne virus as a result of a physical assault in Scotland are remote. In most cases of physical assault there is no direct contact between the body fluids of the two individuals that could cause infection. Even where such blood-to-blood contact takes place, eg where blood from a bleeding assailant comes into contact with an open wound on the victim, the chance of infection is still very low, especially for HIV and hepatitis C. Medical members of the group were therefore concerned by the advice from the Scottish Police Federation that approximately 10% of police officers potentially exposed had been prescribed PEP, the effects of which may contribute to the officer's anxiety. The group noted Health Protection Scotland's comment that it was "unclear on what basis HIV PEP has been recommended in the instances it has", and concluded that provision of information and education, as well as post-incident counselling and psychological care, need to be improved. This too will be addressed in our second report.

13. We have also noted Health Protection Scotland's conclusion that the proposed mandatory testing legislation could lessen the anxiety of the exposed individual but would not reduce the risk of anyone acquiring a blood-borne virus. This was because:

• For hepatitis C, there is no post-exposure prophylactic treatment available, by which to prevent infection;
• For hepatitis B, pre-exposure vaccination and, if necessary, post-exposure treatment would be administered routinely, well in advance of any mandatory blood test result becoming available, and would virtually eliminate the risk of infection;
• For HIV, post-exposure treatment would have to be commenced immediately, and so could not initially be informed by the result of a mandatory blood test (although a negative result might later inform a decision to discontinue treatment that was not necessary).

14. For the reasons set out in both the preceding paragraphs, we consider that the case for mandatory testing would rest more on any potential to reduce psychological trauma, rather than any potential to limit cases of infection. It is unfortunate that this distinction was not clearly made in BTFCI.

A question of civil law

15. The Executive's consultation document proposed legislation to allow a police officer, or anyone else, to apply for mandatory blood testing of a suspected source for this purpose. However, it was proposed that such applications should only be upheld if there was:

a) evidence that the applicant had come into contact with a bodily substance of another individual as a result of that individual committing a crime; and

b) reasonable suspicion that the suspected source might be infected with hepatitis B, hepatitis C or HIV; and

c) medical advice that there was a risk of transfer of a blood-borne viral infection through the incident.

16. The Executive concluded, and we agree, that this is a question of civil rather than criminal law. It is not about prosecuting an offender in the public interest, or imposing punishment on them if convicted. Rather, the sole purpose of the proposals in BTFCI was concerned with health care for the exposed person. That means that mandatory testing would have to be a matter for a civil court, not a criminal court, and the civil standard of proof would necessarily apply.

17. However, a number of respondents to the consultation argued that it was inappropriate for a mandatory blood testing order to be given to a suspect before they had been convicted of an offence. (If this view were to be upheld, it would effectively rule out mandatory testing, because of the urgency of obtaining a resolution.) Some may have taken this view because of the proposal in BTFCI that an order should only be imposed where a risk of infection had arisen as a result of a crime committed by the suspected source - a feature which we reject below. Others might see this as a matter of principle in its own right, whether or not the legislation required a civil court to form a judgement about whether an offence had been committed. We do not subscribe to the latter view. Although there is no exact precedent for a similar order to be made by a civil court, civil courts do of course make a range of very serious decisions affecting the lives of the parties.

Benefit and Responsibility

18. It was implicit in the Scottish Police Federation's petition that one criterion for mandatory testing should be the potential benefit to the exposed person of the test being made mandatory. For this reason, BTFCI proposed that mandatory testing orders could only apply if medical advice was that there was a risk of transfer of a blood-borne virus. We agree the logic of this part of the consultation proposals, though we feel that the requirement of "reasonable suspicion" (paragraph 15 (b) above) is potentially discriminatory, and in any case redundant. The requirement of a recognised risk (paragraph 15 (c)) would be sufficient basis for the court's decision.

19. Another issue central to the petition was the question of responsibility. To put it at its most extreme, any legislation would need some way of distinguishing between a rape victim and a rapist. The medical risk of blood-borne viral infection might be present for both, but in terms of fairness and rights, the victim has a far greater claim to be entitled to access information about any blood-borne virus with which the assailant might be infected.

20. This question of responsibility lay behind the proposal in BTFCI that applications for mandatory testing could only be upheld if the infection had arisen as a result of a crime committed by the suspected source. But the consultation responses drew attention to a number of drawbacks with this approach. Firstly, a number of apparently deserving cases (eg where a front-line worker is exposed to blood from the bleeding victim of a crime) are excluded because no crime was committed by the source; secondly, the direct association of criminality with the requirement to provide a blood sample gives the misleading impression that the order is a punishment for the offence; thirdly, this approach would require a civil court to take a decision on the balance of probabilities about whether an offence had been committed, in advance of a later decision on the same matter by a criminal court using a higher standard of proof. Although not without precedent, this would be awkward for the judicial processes as a whole.

21. However, the approach taken in BTFCI is not the only way in which the question of responsibility could be brought into any legislation. We believe that if any legislation were to proceed it should require a civil court to take into account all the circumstances of the case, and the actions of both parties, before deciding whether to award a mandatory testing order in favour of one against the other. This alternative approach would appear to avoid some of the difficulties with that proposed in BTFCI.

Is legislation for mandatory testing justified?

22. We were asked to consider first the specific question of mandatory testing, as proposed in the Executive's consultation document. Imposing a requirement for a blood test on any individual, with the results to be made available to a third party, would constitute a significant breach of that individual's right to privacy in respect of sensitive information about their health. Our responsibility was to consider whether new legislation should allow a civil court to authorise such a breach in circumstances where, informed by medical advice, the court considered that the potential for the exposed person to benefit from the information should carry greater weight.

23. The Group recognises that these questions relate to human rights concepts as set out in the European Convention on Human Rights, and the question of whether mandatory testing legislation would be justified is essentially a question of proportionality. To justify such interference in an individual's right to privacy, notwithstanding the acknowledged low risk of infection, would require a demonstration of the benefits that the legislation was likely to achieve.

24. Our approach was therefore to analyse the potential for benefit from such legislation against any potential downsides. The next three sections set out: (a) the reasons why mandatory blood testing might benefit exposed individuals; (b) some counterarguments which question the extent of those benefits; and (c) the possibility of unintended adverse consequences of such legislation.

25. The arguments in these next three sections do not address the question of the types of circumstances in which it would be justifiable for a court to prioritise the needs of the exposed person over the rights of the source. Any legislation would need to specify the considerations which a court should take into account, which would presumably include questions related to the issues of responsibility and culpability as discussed briefly above. However, the prior question is to be clear about the potential for benefit to the exposed person.

Potential benefits of mandatory testing orders

26. We have noted that under current practice in many settings, following such incidents, the suspected source is invited to provide a blood sample voluntarily. There is a lack of evidence on how often such consent is, or could be, obtained. It is recognised that consent is more often given when the approach is made by an independent party, perhaps a nurse or doctor, after a cooling-off period. There are some overseas studies which suggest that the majority of people would give consent in such circumstances, but the Scottish Police Federation questions whether experience in Scotland would match this. There is no systematic evidence on this from a Scottish context, which is an issue we consider later (paragraphs 42-43). However, in any event it is clear that some people would withhold consent.

27. Secondly, we take the view that whenever a serious exposure to blood or similar body fluids has taken place, it is useful for doctors to obtain information about whether the source is infected with a blood-borne virus, especially HIV. For example, the chance of a rape victim being infected with HIV by a random assailant is of the order of 1 in 100,000 [2]. But if the rapist is known to be HIV positive, those odds would shorten to the order of 1 in 500, and the medical response might be very different. Similar considerations would apply in cases of physical assault where significant exposure to body fluids had taken place. This conclusion reflects the current Expert Advisory Group on AIDS guidelines for post-exposure source testing in NHS settings [3], which recommend that if initial assessment indicates that an exposure has been significant, consideration should be given to the HIV status of the source patient. The guidelines also include advice about how requests for testing of the source patient can be made.

28. Moreover, in cases where the source is HIV positive, information from their medical records might identify which combination of drugs was most effective in combating the particular strain, and which drugs were known to be ineffective [4]. Such information could be used to inform the choice of drugs used to protect the exposed individual.

29. We further take the view that information from blood tests, whether positive or negative, is also useful to help with the counselling and advice given to exposed people. This may help to minimise the psychological trauma they face, which in some cases can be severe. This would most obviously apply when the result was negative, but could even apply for a positive result, given the psychological value of merely having information.

30. Taken together, these considerations suggest that a victim of crime facing such a risk may stand to benefit from mandatory blood testing, to inform both drug treatment for HIV and counselling; and so establish an initial moral case for prioritising the rights of such a victim.

Limitations on the benefits

31. On the other hand, we have considered various arguments which suggest that there might only be limited benefits to exposed individuals from mandatory testing.

Alternative approaches to testing, treatment and care

32. In terms of determining the medical treatment to prevent infection of the exposed individual (as opposed to counselling), a number of alternative ways to improve care should be noted. We will make our recommendations about these matters in our second report, but the following considerations weaken the case for mandatory testing:

33. For hepatitis B, a vaccination is available and (even for those not vaccinated) immediate post-exposure treatment can prevent acquisition of infection. We believe that vaccination should be available to front-line workers who may face risks of exposure to blood-borne viruses, and we will say more about this in our second report.

34. For hepatitis C, there is no effective treatment in the immediate post-exposure period and so decisions on clinical care can await tests on the exposed individual at around 6 weeks after the incident.

35. For HIV, knowledge of whether the source is HIV-positive may not be a deciding factor in determining what advice to give to the exposed person about PEP. As we noted in paragraph 13, the initial decision about PEP will commonly have to be made before source information is available. Moreover, in some cases where exposure has been serious, doctors might recommend PEP even if tests on the source proved negative. The main reason for this is that if the source has recently contracted HIV (and is in the "window period"), tests will give a false-negative result. In practice these considerations limit the usefulness of information from the source in clinical decisions about the care of the exposed person.

Psychological care and information

36. We believe that the earliest possible access to high quality specialist advice and a better quality of information should be the most important ways to minimise psychological trauma, with or without the availability of a blood test from the source. We believe that current standards of care are patchy, and that there is considerable scope for improvements. We will return to this issue in our second report.

Timeliness and Practicality

37. Mandatory testing orders as proposed in BTFCI would not be beneficially viable in every instance, for reasons of timing and of practicality:

38. Information from mandatory testing is of value only for a limited period after the incident. This is because:

• Within a few weeks to a few months after the incident (the timescale depending on the virus in question) it is possible to test the exposed person directly, to find out if they are infected; by that stage, testing on the exposed person will be of more value than tests on the source, both for combating psychological trauma and for informing treatment.

• Post-exposure prophylactic (PEP) treatment for HIV must begin as soon as possible, ideally within a few hours, and lasts for one month. Therefore, any information which is not available within the first month cannot help to advise whether PEP should be administered or continued.

39. A civil court process, including parties' preparation, provision of legal aid, hearings and appeals, to determine whether a mandatory testing order should be granted, would take up to around 2 weeks to run its full course from application through to the deadline for the blood test results being made available, unless the defender chose to comply early with the applicant's request. Therefore the value of the mandatory testing order will depend entirely on whether it is practical to pursue the case through the civil courts without any delay. If there is any delay in the application being brought, or any doubt about the identity of the source, or if the whereabouts of the source is unknown, it may well be impossible to obtain useful information by means of a mandatory testing order application.

40. There would also be no value to the exposed person if an individual refused to comply with a mandatory testing order once it was made. Under the proposals in BTFCI the individual would then face a fine or short period of imprisonment; but this would be of little comfort to the exposed person who would not have obtained the information they were seeking.

41. Having said this, the fact that mandatory testing orders would be of no value in some cases need not be seen as a reason to reject them for those cases where the policy would be viable.

Would mandatory testing achieve more timely information than voluntary testing could on its own?

42. Two overseas studies, from Amsterdam and Denver, suggest that most accused people will consent to testing if asked in the right way at the right time. There is no direct evidence to indicate whether this would also be the case in Scotland, but this is an area which deserves further attention.

43. It is also possible that the availability of a procedure to make such consent mandatory might result in some criminal suspects taking exception to the element of compulsion, thus prolonging the process, resulting in consent being given much later than it might otherwise have been. It is therefore conceivable that more useful and timely medical information might be lost than gained, as a result of legislation for mandatory testing orders.

Possible drawbacks of mandatory testing legislation

44. We have also considered various arguments put forward by a number of respondents to the consultation, which suggested that the introduction of legislation on mandatory testing could have unintended adverse consequences. We have considered two in particular which may be significant:

There is a risk of malicious applications, or malicious use of information obtained from appropriate applications

45. A number of respondents to the consultation felt that under the BTFCI proposals, there could be a danger of malicious applications being made, and perhaps occasionally being successful; and a danger that even when a blood testing order was sought and obtained in good faith, there could be nothing to prevent the successful applicant publicising the blood test information or otherwise using it maliciously to harm the suspected source. We acknowledge that this would be possible.

The introduction of mandatory testing would damage trust between the communities of those living with blood-borne viruses and the medical profession/police, and would harm attempts to promote voluntary testing for blood-borne viruses

46. A number of respondents working with HIV and hepatitis C communities made this assertion. Others have argued that the existence of a measured and proportionate mandatory testing regime in specific and avoidable circumstances (in particular, criminal acts causing risk of infection to another person) should have no effect on attitudes to blood-borne virus testing in other circumstances.

Conclusion and recommendations

47. The Working Group believes that the care given to police officers and others who have potentially been exposed to body fluids is not currently satisfactory. The psychological trauma experienced by police officers should largely be avoidable. But there is no agreed standard for care and there appears to be a wide disparity in the care being given. We will make specific recommendations on these matters in our second report.

48. However, at the current time there is a lack of hard evidence on whether a system of mandatory blood testing, as proposed in BTFCI, would bring significant benefits for those potentially exposed to blood-borne viruses. In particular, we have noted the advice from Health Protection Scotland that the proposed legislation "would not reduce the risk" of actual transmission of HIV, hepatitis B or hepatitis C. Moreover, it is not clear to what extent the psychological trauma suffered by some in this position can be minimised by other methods, and whether mandatory testing would add significantly to that improvement. Nor is it known whether a greater number of consents to testing would be secured by mandatory testing or by more effective use of the current voluntary system.

49. In this context, the Working Group has unanimously agreed that:

• The next steps should be (a) to focus on improving pre-and post-incident care provided by occupational health services and the NHS - which will be the subject of our second report; and (b) to commission a project to evaluate how incidents are managed, including the issues in paragraph 48 above.
• Legislation for mandatory testing should not be pursued at the present time. But the question of mandatory testing should be reviewed in 2 years' time in the light of (a) the improved standards of care which can be put in place, and (b) police officers' (and others') experience of the care given them following exposure to body fluids, as identified by the recommended project.

Very Revd Graham Forbes
March 2006

Membership of the Working Group

The members of the group, who are responsible for the content of this report, are:

Very Revd Graham Forbes, Provost of St Mary's Cathedral, Edinburgh (chairman)
Dr Oliver Blatchford, British Medical Association
Dr Ray Brettle, Western General Hospital, Edinburgh and UK Expert Advisory Group on AIDS
Sandy Brindley, Rape Crisis Scotland
Dr Bill Carman, West of Scotland Specialist Virology Centre and UK Advisory Group on Hepatitis
Linda Dorward, Scottish Prison Service
Prof David Goldberg, Health Protection Scotland
Joe Grant, Scottish Police Federation
Roy Kilpatrick, HIV Scotland
Jim McDonald, Scottish Police Federation
Rosemarie McIlwhan, Scottish Human Rights Centre (until December 2005)
Dr Elizabeth Murphy, Senior Occupational Physicians Group
Margaret O'Neill, UNISON Scotland
Dr Nicola Rowan, UK Hepatitis C Resource Centre, Mainliners
Dr Kirsty Roy, Health Protection Scotland
Dr Gordon Scott, Scottish HIV/AIDS Group
Andrea Sillars, Association of Chief Police Officers in Scotland
Jane Todd, GMC Scotland
Dr Monika Watt, Medical and Nursing Advisers to the Scottish Police Service

In addition, the following have each attended one meeting of the Working Group to substitute for a Group member:

David Johnson, Waverley Care
Jane O'Brien, General Medical Council
Dr David Jones, Medical and Nursing Advisers to the Scottish Police Service

Support has been provided by the following Scottish Executive officials:

Bill Barron (secretary), Justice Department, Police Division 1
Alison Coull, Office of the Solicitor to the Scottish Executive
Nicola Daly, Crown Office and Procurator Fiscal Service
Sara Evans, Crown Office and Procurator Fiscal Service
Vicky French, Justice Department, Police Division 1
John Froggatt, Health Department, Public Health Team
Bill Hepburn, Justice Department, Victims and Witnesses Unit
Patrick Layden, Office of the Solicitor to the Scottish Executive
Glynis McKeand, Justice Department, Civil Justice Division
Dr Elizabeth Stewart, Health Department, Medical Directorate

[1] Throughout this document, references to Health Protection Scotland's advice are to "Health Protection Scotland's response to a request from the Scottish Executive for expert advice on key aspects of the responses to the Consultation paper 'Blood testing following criminal incidents where there is a risk of infection: Proposals for Legislation'". This advice was published by the Scottish Executive in June 2005.

[2] Figures are derived from Tables 1 and 2 in "UK guideline for the use of post-exposure prophylaxis for HIV following sexual exposure", Fisher et al, in International Journal of STD and AIDS, February 2006

[3] "HIV post-exposure prophylaxis - Guidance from the UK Chief Medical Officers' Expert Advisory Group on AIDS", Department of Health, revised February 2004

[4] See for example Information from the Source Person¸ info sheet number 5 in a series on Occupational Exposure to HBV, HCV or HIV, published by the Canadian HIV/AIDS legal network in 2001.