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Privacy, confidentiality and abortion statistics:a question of public interest?
Jean V McHale,
June Jones
The precise nature and scope of healthcareconfidentiality has long been the subject of debate.While the obligation of confidentiality is integral toprofessional ethical codes and is also safeguarded underEnglish law through the equitable remedy of breach ofconfidence, underpinned by the right to privacy enshrinedin Article 8 of the Human Rights Act 1998, it has neverbeen regarded as absolute. But when can and shouldpersonal information be made available for statistical andresearch purposes and what if the information inquestion is highly sensitive information, such as thatrelating 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 thedecision of the Department of Health to withhold somestatistical data from the publication of its annual abortionstatistics. The specific data being withheld concernedthe termination for serious fetal handicap under section 1(1)d of the Abortion Act 1967. The paper explores theimplications of this case, which relate both to the natureand scope of personal privacy. It suggests that lessonscan be drawn from this case about public interest anduse of statistical information and also about generalpolicy issues concerning the legal regulation ofconfidentiality and privacy in the future.
The precise nature and scope of healthcarecon
dentiality has long been the subject of debate.
 While the obligation of con
dentiality isintegral to professional ethical codes and is alsosafeguarded under English law through the equitableremedy of breach of con
dence, underpinned by theright to privacy enshrined in Article 8 of the HumanRights Act 1998,
it has never been regarded asabsolute.
8 9
 At common law healthcare con
denti-ality can be outweighed by the public interest indisclosure, something re
ected in professional ethicalguidelines.
10 11
In addition, safeguards in relation toinformation disclosure are provided in the context of data protection legislation under the Data Protection Act (DPA) 1998. But when can and should personalinformation be made available for statistical andresearch purposes and what if the information inquestion is highly sensitive information, such as thatrelating to the termination of pregnancy after24 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,concerning the decision of the Department of Health (DH) to withhold some statistical data fromthe publication of its annual abortion statistics.
The speci
c data being withheld concerned thetermination for serious fetal handicap under section1(1) d of the Abortion Act 1967 as amended. Thispaper explores the implications of this case, whichrelate both to the nature and scope of personalprivacy. It suggests that lessons can be drawn fromthis case about public interest and use of statisticalinformation and also about general policy issuesconcerning the legal regulation of con
dentiality andprivacy in the future. Abortion remains a criminal offence in Englishlaw. Section 58 of the Offences Against the Person Act 1868 makes it an offence to procure a miscar-riage. Section 1 of the Infant Life Preservation Act1929 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 Abor-tion Act 1967 (as amended) are complied with. Therelevant provision for the purpose of this articlerelates to section 1(1) (d) where abortion is lawfuluntil birth if authorised by two doctors who agree:
that there is a substantial risk that if the child wereborn it would suffer from some physical or mentalabnormalities as to be seriously handicapped.
 What precisely falls within this section remainsa matter of some debate. What constitutes a serioushandicap was left unde
ned in the legislation andremains the source of debate and controversy.
13 14
The provision was challenged by Joanna Jepson,a Church of England curate in 2003.
She chal-lenged the decision of West Mercia police not toinvestigate an allegation of unlawful abortion.Ultimately in this case the police decided not totake a prosecution further as they determined thatthe doctor had acted in good faith.
Initially, statistical information about abortion waspublished by the Of 
ce for National Statistics. Thisposition changed in April 2002 when this task wastaken over by the DH. The statistics drew uponform HSA4 which must be completed to comply with requirements under the Abortion Regulations1991. The form must be completed within 14 daysof the abortion and includes information about theabortion, clinicians involved, patient
s details, placeand method of termination, gestation, grounds fortermination, any complications and also informa-tion about maternal fatalities. There are two routesfor completing the HSA4 form: a paper version can
Director of the Centre forHealth Law, Science and Policy,School of Law, University ofBirmingham, Birmingham, UK
Centre of Biomedical Ethics,School of Health and PopulationSciences, University ofBirmingham, Birmingham, UK
Correspondence to
Professor Jean McHale, Schoolof Law, University ofBirmingham, Edgbaston,Birmingham B15 2TT, UK; j.v.mchale@bham.ac.ukReceived 3 December 2010Revised 26 April 2011Accepted 24 May 2011Published Online First27 June 2011
 J Med Ethics
34. doi:10.1136/jme.2010.041186 31
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be sent in a HSA4ENV envelop to the chief medical of 
cer(CMO), or a secure electronic version can be completed. Thepaper version is designed to be scanned into the electronic database once received by the CMO.
 After 2003 the DH reduced the amount of detail which waspublished about terminations. This included withholding
guresfor ground E terminations which relate to those abortions after24 weeks sanctioned under section 1(1) (d) of the Abortion Act1967, where there are fewer than 10 cases. For instance, in the2002 Abortion Statistics, it is possible to identify precisely howmany terminations are performed for cleft lip and cleft palate,anencephaly and Down
s syndrome, etc. In contrast, in the 2007 Abortion Statistics,
c abnormalities leading totermination, where there are nine cases or fewer, are listed as
. A request was made under the FOIA for disclosure of thisinformation by the Pro-Life Alliance. The FOIA which wasintroduced by the Labour government and came into force in2005, enables individuals to obtain information held by publicauthorities subject to certain statutory exceptions. The DHstated that data could be disclosed where
ciently abstractfrom the information sent to the CMO
and that they hadsought guidance from the Of 
ce for National Statistics whichwhen received would then lead them to
publish what furtherabortion data for 2003 we feel able to, given the need to protectthe identity of those involved
 After this response an application was made for an internalreview. The head of the freedom of information unit decided notto disclose the information. Disclosure was believed to beprohibited under the Abortion Regulations 1991; the informa-tion amounted to personal data of patients and doctors involvedin abortion and thus it was protected under section 40 of theFOIA. It was also regarded as personal data protected under theDPA and unauthorised disclosure would contravene the dataprotection principles.(The DPA regulates the access, storage and use of personaldata held in both electronic form and in manual
les). A complaint was then brought to the commissioner. At thispoint the DH relied only upon the personal data protection clauseof section 40 FOIA and section 44 FOIA where disclosure wasprohibited by statute. The commissioner found against the DH,stating that section 1 of FOIA had been broken owing to incor-rect reliance upon sections 40 and 44 of FOIA. In addition, failureto issue a refusal notice within 28 days contravened section 17 of the FOIA. The DH appealed to the Information Tribunal, whorejected the appeal, giving their decision in October 2009.
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.
In this case a localnewspaper named Hereford as the area under investigation by  West Mercia Police, which led to media speculation and namingof the clinician who was thought to be involved. This doctoreventually admitted involvement to the press. The DH wasparticularly concerned that both local knowledge and enhanceduse of the internet and social networking sites could assist inidentifying individuals. The question arose as to whetheranonymous information was personal data under the DPA. Thecommissioner argued that it was not and thus it could bereleased without having to apply data protection principles. Incontrast the DH argued that statistical data are not anonymousin the hands of the data controller. The Tribunal took the viewthat for the purposes of section 40(2) (a) FIOA the informationwas personal data under the DPA because the data
relate toindividuals who may be identi
ed from those data and otherinformation held in the HSA4 forms
 As the information was held to be personal data, the nextquestion was whether disclosure of the statistics wouldcontravene the DPA principles. Schedule 1 para 1 para 1 of theDPA provides that
(1) Personal data shall be processed fairly and lawfully and inparticular 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 theconditions in schedule 3 is also met
Here the statistical information related to two differentcategories of person: (a) the person who had had the terminationand (b) the doctor(s) who had authorised the termination. As towhether the disclosure would be
, the Tribunal were satis-
ed that patients would not be misled regarding the form usedto collate the statistics but at the same time would have anexpectation that they would not be identi
able. The Tribunaltook the approach that there was a lower expectation of con
-dentiality 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 lawof abortion
However the Tribunal also recognised that where a doctor hadtreated a particular patient it was not generally informationwhich would be made public. A further fundamental issue was the question of identi
-ability. The guidance for national statistics provides
a guaranteethat no statistics will be produced that are likely to identify oneindividual unless speci
cally agreed with them.
It commentedthat the national statistician has advised that nine cases or fewerhold greater possibility for identi
cation, thus ought not to bedisclosed.
It commented that:
(F) Of some variables at a high geographical level it might be arguedthat the threshold of 10 is high, since it does not expressly relate toguidance provided in the Code of Practice or Protocol or a speci
cintruder scenario. This may lead to higher levels of suppressionthan are necessary to maintain the con
dentiality of the restrictednotice information. However, the sensitivity of these statisticsneeds to be considered.
The Tribunal recognised that non-disclosure was not anabsolute guarantee of con
dentiality. It also noted that theguidance itself was in
uenced by concerns of disclosure after theJepson litigation. The Tribunal noted that statistics here operatedat a national level and were also indicative of the
base pool
all females of childbearing age
The Tribunal did not agreethat Jepson was an example of individuals being identi
able fromstatistics in that the complaint arose in relation to the Metro-politan Police precisely because the complainant could
iden-tify where the termination had taken place, nor was it possible toidentify it from the statistics. Further, there was no evidence thatthe hospital or doctor had been identi
ed from the general data.Moreover the second doctor in the Jepson litigation had neverbeen identi
ed. They took the view that note should have beentaken of the
motivated defender
where hospitals dealing withthe sensitive issue of abortion should be well able to appreciatethe importance of not con
rming or denying involvement.
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Tribunal took the view that
the possibility of identi
cation by a third party from the statistics is very remote.
Moreover itrelied upon the approach taken in
Johnson v MDU 
where the courthad held that
fairness required consideration of the interests of not only data subjects but also of data users.
The Tribunal considered the balance between the legitimateinterests of third parties and the rights and freedoms of the datasubjects under schedule 2 para 6(1)(1) DPA. It took the approachthat here the aims in relation to the disclosure were legitimateand that they could not be achieved by 
means that involve lessinterference whether the disclosure would have an excessive ordisproportionate adverse effect on legitimate interests
They rejected the claim by the DH that disclosure of nine cases orfewer 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 towhich the disclosure of anonymised personal informationconstitutes a breach of Article 8. Some judicial statements beforethe Human Rights Act in the case of 
R v Department of Health ex parte Source Informatics
suggested that the disclosure of personal information would not constitute an infringement of personal privacy where this was anonymised. However, it can beargued that anonymisation may not necessarily constitutesuf 
cient protection for privacy interests.
 Anonymisation may remove the question of disclosure of identity but where infor-mation is disclosed without explicit individual consent todisclosure having been given there is still the prospect that thismay constitute an infringement of Article 8 of ECHR. This isbecause although identity may not be disclosed an individualmay object to their information being used for a particularpurpose 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, itwas in accordance with law and proportionate and necessary forthe prevention of crime (illegal abortions) and for protection of health as a risk in relation to late termination. The Tribunalnoted that
statistics are important in planning resources andassessing training needs with the aim of reducing late termi-nations
Finally, the Tribunal was concerned to address theissue of the rights and freedoms of others which needed to besafeguarded, including the right to lobby parliament and stim-ulate public debate.
This forms a key issue in the con
ict of interests raised by the non-disclosure of abortion statistics. Theneed to protect the con
dentiality of women (and perhapsdoctors) needs to be weighed against the right to accurateinformation to inform public debate.The Tribunal accepted evidence from Professor Campbell,former head of the departments of obstetrics and gynaecology atboth Kings College and St George
s Medical Schools, that therewas considerable uncertainty as to how the Abortion Act wasbeing applied because valuable data were being withheld. Inaddition, he claimed that detailed recording and publication of statistics
served as a reminder (to doctors) that they wereaccountable and prevented carelessness creeping in
TheTribunal also noted evidence that since Jepson certain hospitalshad convened ethics panels to determine whether certainterminations of pregnancy after 24 weeks were warranted.Interestingly, the Tribunal was of the view that the DH hada duty to ensure that the Abortion Act was properly followed.Furthermore, from evidence presented it
was concerned thatthere 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, spotchecks, outside opinions or quality control of the basis for thetermination
The Tribunal also saw that such informationcould be useful to identify trends and in planning healthcareservices, including monitoring of fetal abnormality rates. It tookthe view that the need for a balanced and factually accuratepublic debate militated in favour of disclosure.The Tribunal considered whether disclosure would havea disproportionate impact upon the data subject. It recognisedthat identi
cation of a patient could have very seriousconsequences. However, it suggested that such risk of identi
-cation was so unlikely that a patient
s fear of identi
cation wasunrealistic. The Tribunal did recognise that there could be very serious implications for doctors who were identi
ed. However,the risk of identi
cation would not deter doctors from theprofession. Furthermore, as with patients it noted that theprospect of identi
is so remote that the disclosure of the disputed information would not be unwarranted
The Tribunal decision in
In the Matter of an Appeal to the Infor-mation Tribunal under section 57 of the FOIA 2000,
raises someinteresting issues. It highlights what has been a longstandingtension in medical practice over many years between safe-guarding con
dentiality and the public interest. The importanceof the case concerns the question of public access to informationregarding abortion as a clinical procedure. The need to maintainpatient con
dentiality, both for women who have had termi-nations and for those who will have in the future, is of courseparamount to good healthcare. This is undoubtedly highly sensitive information. Clearly, it is crucial to ensure that effec-tive data security measures are in place to ensure con
dentiality for individual women. However, substantial public interestsexist in data being released both in relation to NHS serviceprovision in the future and also in relation to effective researchwhich may be impeded where access to accurate data is denied.The risk of identi
cation is so remote that the public interestarguments weigh in favour of the disclosure of accurate data. If it is impossible to ensure effective data security this would alsoraise serious concerns about anonymisation as a justi
cation forenabling the use of healthcare information in a wide range of other healthcare contexts.Equally, the case raises a series of broader questions about thedisclosure of personal health information which require futureengagement. 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 healthinformation and where should the boundaries of disclosure lie
To what extent can and should the health service itself controlaccess to information, albeit anonymised or should this besimply an issue for control by the individual
These areimportant questions given the value placed by researchers uponthe ability to use anonymised information. This is an areawhich is underpinned by questions of human rights
notably,the right to privacy. The law in this area provides a somewhatuncertain backdrop for health service policy and practice in thisarea. In some instances there is explicit statutory recognitionthrough section 251 of the NHS Act 2006 (previously section 60of the Health and Social Care Act 2001) and related regulationsthat anonymised information may be disclosed where this fallswithin certain speci
ed public interest categories. This provi-sion is controversial and has been the subject of academicdiscussion.
23 24
The development of statutory exceptions andindeed the growth in the use of anonymised information insuch an ad hoc way needs to be regarded with some caution as
 J Med Ethics
34. doi:10.1136/jme.2010.041186 33
Law, ethics and medicine
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