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Law, ethics and medicine

PAPER

Privacy, condentiality and abortion statistics: a question of public interest?

Jean V McHale,1 June Jones2
1

Director of the Centre for Health Law, Science and Policy, School of Law, University of Birmingham, Birmingham, UK 2 Centre of Biomedical Ethics, School of Health and Population Sciences, University of Birmingham, Birmingham, UK Correspondence to Professor Jean McHale, School of Law, University of Birmingham, Edgbaston, Birmingham B15 2TT, UK; j.v.mchale@bham.ac.uk Received 3 December 2010 Revised 26 April 2011 Accepted 24 May 2011 Published Online First 27 June 2011

ABSTRACT The precise nature and scope of healthcare condentiality has long been the subject of debate. While the obligation of condentiality is integral to professional ethical codes and is also safeguarded under English law through the equitable remedy of breach of condence, underpinned by the right to privacy enshrined in Article 8 of the Human Rights Act 1998, it has never been regarded as absolute. But when can and should personal information be made available for statistical and research purposes and what if the information in question is highly sensitive information, such as that relating to the termination of pregnancy after 24 weeks? This article explores the case of In the Matter of an Appeal to the Information Tribunal under section 57 of the Freedom of Information Act 2000, concerning the decision of the Department of Health to withhold some statistical data from the publication of its annual abortion statistics. The specic data being withheld concerned the termination for serious fetal handicap under section 1 (1)d of the Abortion Act 1967. The paper explores the implications of this case, which relate both to the nature and scope of personal privacy. It suggests that lessons can be drawn from this case about public interest and use of statistical information and also about general policy issues concerning the legal regulation of condentiality and privacy in the future.

concerning the decision of the Department of Health (DH) to withhold some statistical data from the publication of its annual abortion statistics.12 The specic data being withheld concerned the termination for serious fetal handicap under section 1(1) d of the Abortion Act 1967 as amended. This paper explores the implications of this case, which relate both to the nature and scope of personal privacy. It suggests that lessons can be drawn from this case about public interest and use of statistical information and also about general policy issues concerning the legal regulation of condentiality and privacy in the future. Abortion remains a criminal offence in English law. Section 58 of the Offences Against the Person Act 1868 makes it an offence to procure a miscarriage. Section 1 of the Infant Life Preservation Act 1929 also makes it an offence to destroy the life of a child capable of being born alive. Abortion is, however, lawful where the provisions of the Abortion Act 1967 (as amended) are complied with. The relevant provision for the purpose of this article relates to section 1(1) (d) where abortion is lawful until birth if authorised by two doctors who agree:
that there is a substantial risk that if the child were born it would suffer from some physical or mental abnormalities as to be seriously handicapped.

INTRODUCTION
The precise nature and scope of healthcare condentiality has long been the subject of debate.1e3 While the obligation of condentiality is integral to professional ethical codes and is also safeguarded under English law through the equitable remedy of breach of condence, underpinned by the right to privacy enshrined in Article 8 of the Human Rights Act 1998,4e7 it has never been regarded as absolute.8 9 At common law healthcare condentiality can be outweighed by the public interest in disclosure, something reected in professional ethical guidelines.10 11 In addition, safeguards in relation to information disclosure are provided in the context of data protection legislation under the Data Protection Act (DPA) 1998. But when can and should personal information be made available for statistical and research purposes and what if the information in question is highly sensitive information, such as that relating to the termination of pregnancy after 24 weeks? This issue arose in the recent case of In the Matter of an Appeal to the Information Tribunal under section 57 of the Freedom of Information Act (FOIA) 2000, a judgement handed down in October 2009,
J Med Ethics 2012;38:31e34. doi:10.1136/jme.2010.041186

What precisely falls within this section remains a matter of some debate. What constitutes a serious handicap was left undened in the legislation and remains the source of debate and controversy.13 14 The provision was challenged by Joanna Jepson, a Church of England curate in 2003.15 She challenged the decision of West Mercia police not to investigate an allegation of unlawful abortion. Ultimately in this case the police decided not to take a prosecution further as they determined that the doctor had acted in good faith.

OBTAINING INFORMATION ABOUT ABORTION

Initially, statistical information about abortion was published by the Ofce for National Statistics. This position changed in April 2002 when this task was taken over by the DH. The statistics drew upon form HSA4 which must be completed to comply with requirements under the Abortion Regulations 1991. The form must be completed within 14 days of the abortion and includes information about the abortion, clinicians involved, patients details, place and method of termination, gestation, grounds for termination, any complications and also information about maternal fatalities. There are two routes for completing the HSA4 form: a paper version can
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Law, ethics and medicine

be sent in a HSA4ENV envelop to the chief medical ofcer (CMO), or a secure electronic version can be completed. The paper version is designed to be scanned into the electronic data base once received by the CMO.16 After 2003 the DH reduced the amount of detail which was published about terminations. This included withholding gures for ground E terminations which relate to those abortions after 24 weeks sanctioned under section 1(1) (d) of the Abortion Act 1967, where there are fewer than 10 cases. For instance, in the 2002 Abortion Statistics, it is possible to identify precisely how many terminations are performed for cleft lip and cleft palate, anencephaly and Downs syndrome, etc. In contrast, in the 2007 Abortion Statistics,17 specic abnormalities leading to termination, where there are nine cases or fewer, are listed as other . A request was made under the FOIA for disclosure of this information by the Pro-Life Alliance. The FOIA which was introduced by the Labour government and came into force in 2005, enables individuals to obtain information held by public authorities subject to certain statutory exceptions. The DH stated that data could be disclosed where sufciently abstract from the information sent to the CMO 12a and that they had sought guidance from the Ofce for National Statistics which when received would then lead them to publish what further abortion data for 2003 we feel able to, given the need to protect the identity of those involved.12a After this response an application was made for an internal review. The head of the freedom of information unit decided not to disclose the information. Disclosure was believed to be prohibited under the Abortion Regulations 1991; the information amounted to personal data of patients and doctors involved in abortion and thus it was protected under section 40 of the FOIA. It was also regarded as personal data protected under the DPA and unauthorised disclosure would contravene the data protection principles. (The DPA regulates the access, storage and use of personal data held in both electronic form and in manual les). A complaint was then brought to the commissioner. At this point the DH relied only upon the personal data protection clause of section 40 FOIA and section 44 FOIA where disclosure was prohibited by statute. The commissioner found against the DH, stating that section 1 of FOIA had been broken owing to incorrect reliance upon sections 40 and 44 of FOIA. In addition, failure to issue a refusal notice within 28 days contravened section 17 of the FOIA. The DH appealed to the Information Tribunal, who rejected the appeal, giving their decision in October 2009.12 was personal data under the DPA because the data relate to individuals who may be identied from those data and other information held in the HSA4 forms.12c As the information was held to be personal data, the next question was whether disclosure of the statistics would contravene the DPA principles. Schedule 1 para 1 para 1 of the DPA provides that
(1) Personal data shall be processed fairly and lawfully and in particular shall not be processed unless(a) at least one of the conditions in schedule 2 is met and (b) in the case of sensitive personal data at least one of the conditions in schedule 3 is also met.

Here the statistical information related to two different categories of person: (a) the person who had had the termination and (b) the doctor(s) who had authorised the termination. As to whether the disclosure would be fair , the Tribunal were satised that patients would not be misled regarding the form used to collate the statistics but at the same time would have an expectation that they would not be identiable. The Tribunal took the approach that there was a lower expectation of condentiality towards doctors because: < it is their profession; < they have a public role; < it is not sensitive personal data; < there is a criminal sanction for failure to comply with the law of abortion.12d However the Tribunal also recognised that where a doctor had treated a particular patient it was not generally information which would be made public. A further fundamental issue was the question of identiability. The guidance for national statistics provides a guarantee that no statistics will be produced that are likely to identify one individual unless specically agreed with them.18 It commented that the national statistician has advised that nine cases or fewer hold greater possibility for identication, thus ought not to be disclosed.19 It commented that:
(F) Of some variables at a high geographical level it might be argued that the threshold of 10 is high, since it does not expressly relate to guidance provided in the Code of Practice or Protocol or a specic intruder scenario. This may lead to higher levels of suppression than are necessary to maintain the condentiality of the restricted notice information. However, the sensitivity of these statistics needs to be considered.19

DICHOTOMY BETWEEN PERSONAL AND PRIVATE

Before the Tribunal the DH expressed concerns about the risk of the press identifying individuals involved in an abortion, a concern arising from the Jepson case.12b In this case a local newspaper named Hereford as the area under investigation by West Mercia Police, which led to media speculation and naming of the clinician who was thought to be involved. This doctor eventually admitted involvement to the press. The DH was particularly concerned that both local knowledge and enhanced use of the internet and social networking sites could assist in identifying individuals. The question arose as to whether anonymous information was personal data under the DPA. The commissioner argued that it was not and thus it could be released without having to apply data protection principles. In contrast the DH argued that statistical data are not anonymous in the hands of the data controller. The Tribunal took the view that for the purposes of section 40(2) (a) FIOA the information

The Tribunal recognised that non-disclosure was not an absolute guarantee of condentiality. It also noted that the guidance itself was inuenced by concerns of disclosure after the Jepson litigation. The Tribunal noted that statistics here operated at a national level and were also indicative of the base pool that is all females of childbearing age.12e The Tribunal did not agree that Jepson was an example of individuals being identiable from statistics in that the complaint arose in relation to the Metropolitan Police precisely because the complainant could not identify where the termination had taken place, nor was it possible to identify it from the statistics. Further, there was no evidence that the hospital or doctor had been identied from the general data. Moreover the second doctor in the Jepson litigation had never been identied. They took the view that note should have been taken of the motivated defender where hospitals dealing with the sensitive issue of abortion should be well able to appreciate the importance of not conrming or denying involvement.12f The

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Law, ethics and medicine

Tribunal took the view that the possibility of identication by a third party from the statistics is very remote.12g Moreover it relied upon the approach taken in Johnson v MDU where the court had held that fairness required consideration of the interests of not only data subjects but also of data users.20 The Tribunal considered the balance between the legitimate interests of third parties and the rights and freedoms of the data subjects under schedule 2 para 6(1)(1) DPA. It took the approach that here the aims in relation to the disclosure were legitimate and that they could not be achieved by means that involve less interference whether the disclosure would have an excessive or disproportionate adverse effect on legitimate interests.12h They rejected the claim by the DH that disclosure of nine cases or fewer would breach Article 8 of the European Convention of Human Rights, the right to respect for private and family life. One interesting and indeed controversial issue is the extent to which the disclosure of anonymised personal information constitutes a breach of Article 8. Some judicial statements before the Human Rights Act in the case of R v Department of Health ex parte Source Informatics21 suggested that the disclosure of personal information would not constitute an infringement of personal privacy where this was anonymised. However, it can be argued that anonymisation may not necessarily constitute sufcient protection for privacy interests.22 Anonymisation may remove the question of disclosure of identity but where information is disclosed without explicit individual consent to disclosure having been given there is still the prospect that this may constitute an infringement of Article 8 of ECHR. This is because although identity may not be disclosed an individual may object to their information being used for a particular purpose without explicit consent having been given for that use. Such use may constitute an infringement of personal autonomy which is safeguarded under Article 8. The Tribunal stated that even if Article 8 had been engaged, it was in accordance with law and proportionate and necessary for the prevention of crime (illegal abortions) and for protection of health as a risk in relation to late termination. The Tribunal noted that statistics are important in planning resources and assessing training needs with the aim of reducing late terminations.12i Finally, the Tribunal was concerned to address the issue of the rights and freedoms of others which needed to be safeguarded, including the right to lobby parliament and stimulate public debate.12i This forms a key issue in the conict of interests raised by the non-disclosure of abortion statistics. The need to protect the condentiality of women (and perhaps doctors) needs to be weighed against the right to accurate information to inform public debate. The Tribunal accepted evidence from Professor Campbell, former head of the departments of obstetrics and gynaecology at both Kings College and St Georges Medical Schools, that there was considerable uncertainty as to how the Abortion Act was being applied because valuable data were being withheld. In addition, he claimed that detailed recording and publication of statistics served as a reminder (to doctors) that they were accountable and prevented carelessness creeping in.12j The Tribunal also noted evidence that since Jepson certain hospitals had convened ethics panels to determine whether certain terminations of pregnancy after 24 weeks were warranted. Interestingly, the Tribunal was of the view that the DH had a duty to ensure that the Abortion Act was properly followed. Furthermore, from evidence presented it was concerned that there did not seem to be a mechanism for rigorous scrutiny of the forms to ensure compliance with the Act. The scrutiny described amounted to self-regulation with no audit, spot
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checks, outside opinions or quality control of the basis for the termination.12k The Tribunal also saw that such information could be useful to identify trends and in planning healthcare services, including monitoring of fetal abnormality rates. It took the view that the need for a balanced and factually accurate public debate militated in favour of disclosure. The Tribunal considered whether disclosure would have a disproportionate impact upon the data subject. It recognised that identication of a patient could have very serious consequences. However, it suggested that such risk of identication was so unlikely that a patients fear of identication was unrealistic. The Tribunal did recognise that there could be very serious implications for doctors who were identied. However, the risk of identication would not deter doctors from the profession. Furthermore, as with patients it noted that the prospect of identication is so remote that the disclosure of the disputed information would not be unwarranted.12l

CONCLUDING COMMENTS
The Tribunal decision in In the Matter of an Appeal to the Information Tribunal under section 57 of the FOIA 2000, raises some interesting issues. It highlights what has been a longstanding tension in medical practice over many years between safeguarding condentiality and the public interest. The importance of the case concerns the question of public access to information regarding abortion as a clinical procedure. The need to maintain patient condentiality, both for women who have had terminations and for those who will have in the future, is of course paramount to good healthcare. This is undoubtedly highly sensitive information. Clearly, it is crucial to ensure that effective data security measures are in place to ensure condentiality for individual women. However, substantial public interests exist in data being released both in relation to NHS service provision in the future and also in relation to effective research which may be impeded where access to accurate data is denied. The risk of identication is so remote that the public interest arguments weigh in favour of the disclosure of accurate data. If it is impossible to ensure effective data security this would also raise serious concerns about anonymisation as a justication for enabling the use of healthcare information in a wide range of other healthcare contexts. Equally, the case raises a series of broader questions about the disclosure of personal health information which require future engagement. The case operated through the prism of the FIOA and the DPA and was rooted in DH disclosure of information. But who precisely should control access to personal health information and where should the boundaries of disclosure lie? To what extent can and should the health service itself control access to information, albeit anonymised or should this be simply an issue for control by the individual? These are important questions given the value placed by researchers upon the ability to use anonymised information. This is an area which is underpinned by questions of human rightsdnotably, the right to privacy. The law in this area provides a somewhat uncertain backdrop for health service policy and practice in this area. In some instances there is explicit statutory recognition through section 251 of the NHS Act 2006 (previously section 60 of the Health and Social Care Act 2001) and related regulations that anonymised information may be disclosed where this falls within certain specied public interest categories. This provision is controversial and has been the subject of academic discussion.23 24 The development of statutory exceptions and indeed the growth in the use of anonymised information in such an ad hoc way needs to be regarded with some caution as
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we have noted above. Moreover, the DPA has to be seen alongside existing safeguards for privacy and condentiality. It simply complements but does not supplant these. It is submitted that there is a case for re-engagement not only with the issue of the extent to which patient information (anonymised or not) can, and indeed should, be used for audit, research and other health service needs but also with the broader questions of the boundaries of information disclosure in relation to healthcare. In the past there have been calls in England and Wales to place the law of condentiality, in general, and healthcare condentiality, in particular, on a statutory footing.25 26 Certainly this area of law would benet from some greater clarity. Perhaps there is a case now for this issue to be re-examined and the whole area of privacy and condentiality in healthcare to become the subject of a thorough independent review.
Competing interests None declared. Provenance and peer review Not commissioned; externally peer reviewed.
7. 8. 9. 10. 11. 12. McHale J, Fox M. Health Care Lawe Text and Materials. 2nd edn. London: Sweet and Maxwell, 2007, chapter 9. W v Egdell [1990] 1 All ER 835. McHale JV. Condentiality: an absolute obligation? Mod Law Rev, 1989;52:715. GMC. Condentiality. London:GMC, 2009. NMC. The Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives. London: NMC, 2008. In the Matter of an Appeal to the Information Tribunal under Section 57 of the Freedom of Information Act 2000. Information Tribunal Appeal No EA 2008/0074. a Para 8, b para 18, c para 43, d para 51, e para 60, f paras 65e6, g para 70, h para 75, i para 72, j para 78, k para 81, l para 107. Sheldon S, Wilkinson S. Termination of pregnancy for reason of foetal disability: are there grounds for a special exception in law. Med Law Rev 2001;9:85e109. Wicks E, Wyldes M, Kilby M. Late termination of pregnancy for fetal abnormality. Med Law Rev 2003;12:285. Jepson v Chief Constable of West Mercia [2003] EWCA 3318. Department of Health. Guidance Note for completing the Abortion Notication form HSA4 (in England and Wales). http://www.dh.gov.uk. Department of Health. Abortion Statistics, England and Wales. 2007. Table 9. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsStatistics/DH_085508. National Statistics Code of Practice and Protocol on Data Access and Condentiality. 2002. Disclosure Review for Health Statistics: 1st Report-Guidance for Abortion Statistics. London: Department of Health, 2005. para 2.11. [2007] EWCA Civ 262. [2000] 1 All ER 786 CA. Beyleveld D, Histed E. Betrayl of Condence in the Court of Appeal. Medical Law Int 2000;4:277e311. Case P. Condence matters: the rise and fall of informational autonomy in medical law. Med Law Rev 2003;11:208e36. Turnberg L. Common sense and common consent in communicable disease surveillance. J Med Ethics 2002;30:104. Law Commission Report No 110 Breach of Condence Cmnd 8388. 1981. The Disclosure and Use of Personal Health Information Bill 1996.

13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26.

REFERENCES
1. 2. 3. 4. 5. 6. McHale JV. Medical Condentiality and Legal Privilege. London: Routledge, 1993, chapter 4. Laurie G. Genetic Privacy Cambridge. CUP, 2004. Human Genetics Commission Inside Information. London: HGC, 2002. X v Y [1988] 2 All ER 648. Campbell v. Mirror Group Newspapers [2004] 2 All ER 99. Jackson E. Medical Lawe Text, Cases and Materials. Oxford: OUP, 2010, Chapter 6.

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Privacy, confidentiality and abortion statistics: a question of public interest?

Jean V McHale and June Jones J Med Ethics 2012 38: 31-34 originally published online June 27, 2011

doi: 10.1136/jme.2010.041186

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