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Keeping the secrets of the dead? An evaluation of the statutory framework for access to information about deceased persons

Published online by Cambridge University Press:  02 January 2018

Mary Donnelly
Affiliation:
Law Faculty, University College Cork, Ireland
Maeve McDonagh
Affiliation:
Law Faculty, University College Cork, Ireland

Abstract

In England and Wales, the question of access to information about deceased persons is determined under two separate statutes: the Access to Health Records Act 1990 and the Freedom of Information Act 2000. This paper examines the normative and legal issues raised by access to information about the dead and evaluates the statutory framework. It draws on philosophical and legal sources which support the claim that the dead are owed a moral and legal duty of confidence. However, it also shows that this is not an absolute duty and it identifies the public and private justifications which favour the provision of access to information about the dead. It argues that the current statutory framework is excessively restrictive and that it fails to provide an appropriate context within which interests favouring access may be considered. Accordingly, it argues that the law needs to be reformed and that a specific legislative framework dealing with access to information about the dead should be introduced. The paper concludes by setting out some preliminary suggestions regarding the possible form of such a legislative framework.

Type
Research Article
Copyright
Copyright © Society of Legal Scholars 2011

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References

1. Births and Deaths Registration Act 1953, s 15.

2. Coroners Rules 1984, SI 1984/552, r 17. Note, however, that the Coroners and Justice Act 2009 controversially permits inquests to be held in private in certain designated limited circumstances.

3. Although the AHRA covers health records whether held by private or public health professionals, these records might be described as ‘public’ in that they are held by bodies other than the deceased and, following death, his or her personal representatives.

4. As in the Queensland case of Bultitude and Princess Alexandra Hospital and District Health Service (2000) 5 QAR 352.

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11. Ibid, p 91.

12. Ibid.

13. Ibid, p 88.

14. Feinberg expands the example by including a third scenario – where the collapse of the enterprise is as a result of malicious rumours wrongly spread by rivals. This, he argues (ibid, p 89), reinforces the earlier examples – here, the woman has not just been harmed, she has been ‘exploited, betrayed and wronged’.

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19. Sperling, ibid, p 34.

20. Although Sperling's analysis is focused primarily on posthumous interests, he postulates (ibid, p 13) also the existence of pre-birth interests.

21. Ibid, p 37.

22. Ibid, p 14. As an example, Sperling gives the interest in being posthumously respected in decisions regarding the disposal of one's body and estate.

23. Ibid. As an example of interests included in this category, Sperling gives the interest in being the object of affection or esteem by others, the interest in one's promises not being broken and the interest in having one's loved ones flourish.

24. Ibid, p 38. Note Sperling's rejection of other bases for a theory of posthumous rights: ibid, pp 53–63.

25. Ibid, p 84.

26. Ibid, p 86.

27. Ibid.

28. Ibid.

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33. While one might imagine a society in which the living had no interest whatever in their posthumous fates, the focus on burial rites in even primitive societies is a reminder of the fundamental nature of the human interest in such matters: see Bendann, E Death Customs: An Analytical Study of Burial Rites (1930) (Montana: Kessinger Publishing Co, 2003).Google Scholar

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39. Ibid.

40. See Lewis v Secretary of State for Health and Another [2008] EWHC 2196 (QB) at [22], discussed further in text to n 63 below.

41. See Bluck v The Information Commissioner and Epsom & St Helier University NHS Trust EA/2006/0090, 17 September 2007, discussed in text to n 58 below.

42. Sperling, above n 7, p 195 cites a number of studies which suggest that many patients do not know about the medical duty of confidentiality and that knowledge of the existence of the duty had little impact on the degree to which patients reported information to medical professionals.

43. (2006) 42 EHRR 36. See discussion in text following n 72 below.

44. Lincoln was one of a number of famous public figures (others were Henri Toulouse-Lautrec and the Romanov family) whose genetic material was analysed long after his death; see de Renzo, Eg, Biesecker, Lg and Meltzer, N ‘Genetics and the dead: implications for genetics research with samples from deceased persons’ (1997) 69 American Journal of Medical Genetics 332.3.0.CO;2-R>CrossRefGoogle Scholar

45. Above n 40.

46. Ibid, at [28].

47. Sciacca v Italy (2006) 43 EHRR 400 at 29. However, public figures do still have a ‘zone of interaction’ with others, even in a public context, which falls within the ambit of Art 8; see von Hannover v Germany (2005) 40 EHRR 1.

48. Craxi v Italy (2004) 38 EHRR 47.

49. See text to n 166 below.

50. See Sperling, above n 7, pp 206–207.

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52. (1851) 9 Hare 241. The case was concerned with the commercialisation of confidential information which had been disclosed to the defendant prior to the confider's death.

53. Law Commission Breach of Confidence Cmnd 8388, 1981, p 83. However, the Commission considered (ibid, p 82) that, if the breach of confidence had taken place prior to the death, the personal representatives of the deceased could bring an action based on the breach.

54. Above n 41. See commentary in Pitt-Payne, T ‘Mother, I sue dead people’ (2007) 157 New Law Journal 1532.Google Scholar

55. Re Epsom & St Helier University NHS Trust Information Commissioner FS50071069, 23 October 2006.

56. Above n 41, para 18.

57. Ibid, para 19.

58. Ibid, para 21.

59. Ibid, para 28.

60. Ibid, para 15.

61. Ibid, para 29.

62. Above n 40, para 18.

63. Ibid, para 22.

64. (1997) 25 EHRR 371.

65. Ibid, at para 95 as referred to by Baroness Hale in Campbell v MGN Ltd [2004] UKHL 22, [2004] 2 AC 457 and quoted by Foskett J in Lewis, above n 40, at [21].

66. The facts were unusual in that the information regarding the claimant's HIV status had been obtained from the claimant's doctor under a court order as part of an investigation in respect of rapes committed by the claimant's husband which, if he had been aware of his own HIV status, could have amounted to attempted manslaughter (under Finnish criminal law).

67. Immediately following the passage quoted, the court, (1997) 25 EHRR 371 at para 95, referred to Recommendation No R (89) 14 on ‘The Ethical Issues of HIV Infection in the Health Care and Social Settings’. The court, at para 96, noted the particularly serious consequences which could arise from the release of information about HIV status.

68. Above n 40, at [22].

69. Ibid, at [26].

70. See text to n 125 below.

71. Above n 40, at [27].

72. (2006) 42 EHRR 36, para 34.

73. Ibid, para 53.

74. Ibid.

75. Confidentiality: Protecting and Providing Information (London: General Medical Council, 2004), available at http://www.gmc-uk.org/guidance/current/library/confidentiality.asp. See further discussion in text to n 139 below.

76. Ibid, para 1.

77. Ibid, para 11.

78. Ibid, para 30.

79. Note, however, the statement in the NHS Code of Practice Confidentiality (Department of Health, 2003) p 29 that ‘[w]hen an individual has died, it is unlikely that information relating to that individual remains legally confidential’.

80. Mr S and Edinburgh City Council Decision 165/2007, 20 September 2007; Mrs G and Aberdeen City Council Decision 029/2008, 21 February 2008. The Commissioner took the view that the detriment requirement is satisfied by the potential for distress that release might cause to surviving relatives of the deceased and to the health professionals who had provided the information.

81. In Case No W42031, 12th Compendium of Case Notes of the Ombudsmen, p 97, the Ombudsmen appeared to accept in one case that an obligation of confidence could arise in respect of a deceased person, although they declined on other grounds to uphold the application of the confidentiality exemption in the instant case.

82. In Report 108 For Your Information: Australian Privacy Law and Practice (2008) para.8.18, the Australian Law Reform Commission tentatively supported the suggestion that the protection provided by legal duties of confidence survives the death of the individual (although the sole authority relied on in this respect was Bluck ).

83. See Peter Petrowski v John Petrowski [2005] CarswellAlta 1823, 1 December 2005 (Alta Ct Queen's Bench), quoted in Sperling, above n 7, p 191.

84. 334 US App DC 20, 164 F.3d 20, 33 (DC Cir 1998).

85. 4 F.3d 1227 (3d Cir 1993).

86. Ibid, at 1261.

87. 541 US 157 (2004).

88. Ibid, at 166.

89. A right of privacy is protected under Art 40.3.1 of the Constitution of Ireland; see Kennedy and Arnold v Ireland [1987] IR 587.

90. [2009] IEHC 315 at para 102.

91. Ibid, para 70.

92. Re Mr X and Health Service Executive Decision No 040149, 31 May 2007.

93. Exemption 7(C) of the Freedom of Information Act 1966, as amended, bars disclosure of information compiled for law enforcement purposes that ‘could reasonably be expected to constitute an unwarranted invasion of personal privacy’.

94. Above n 87, at 166.

95. Ibid, at 166–167.

96. See, eg, Schuyler v Curtis 147 NY 434, 447, 42 NE 22, 25 (1895); Reid v Pierce County 136 Wn 2d 195, 212, 961 P.2d 333, 342 (1998). Compare Williams v City of Minneola 575 So.2d 683 (Fla Dist Ct App 1991) and Loft v Fuller 408 So.2d 619 (Fla 4th DCA 1981), rev denied, 419 So.2d 1198 (Fla 1982) where arguments in respect of the common law protection of survivor privacy were rejected on the facts.

97. 27 November 2003 (available in English at http://www.mannvern.is).

98. Directive 95/46/EC [1995] OJ L281/31. Although Iceland is not currently an EU Member State, it is a member of the European Economic Area and has transposed the Data Protection Directive.

99. Gertz, R ‘Is it “me” or “we”? Genetic relations and the meaning of “personal data” under the Data Protection Directive’ (2004) 11 European Journal of Health Law 231 at 237.CrossRefGoogle Scholar

100. For a detailed analysis, see Laurie, G Genetic Privacy: A Challenge to Medico-Legal Norms (Cambridge: Cambridge University Press, 2002).CrossRefGoogle Scholar

101. See further ibid, ch 3; Gertz, above n 99, at 237–240. See also Donchin, A ‘Autonomy and interdependence: quandaries in genetic decision making’ in Mackenzie, C and Stoljar, N (eds) Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self (New York: Oxford University Press, 2000).Google Scholar

102. Mackenzie and Stoljar, ibid, p 4. This kind of approach is most commonly associated with communitarian and feminist theorists (although there are significance differences between the two approaches). For a communitarian argument, see Sandel, M Liberalism and the Limits of Justice (Cambridge: Cambridge University Press, 2nd edn, 1997)Google Scholar; for feminist arguments, see Mackenzie and Stoljar, ibid; Sclater, D et al (eds) Regulating Autonomy: Sex, Reproduction and Family (Oxford: Hart, 2009).Google Scholar

103. Above n 100, p 234.

104. See text following n 1 above.

105. See Bonnici and Choong, above n 5, at 156.

106. See Citi Consulting Pty Ltd v DTF [1999] VCAT 1376.

107. See Harris, above n 6, at 541; Brazier, above n 6, at 551.

108. See Lucassen, A, Parker, M and Wheeler, R ‘Role of next of kin in accessing health records of deceased relatives’ (2004) 328 British Medical Journal 952.CrossRefGoogle Scholar

109. See, eg, Bultitude and Princess Alexandra Hospital, above n 4.

110. See Lucassen et al, above n 108.

111. Above n 6, at 305.

112. See Robinson, D and O'Neill, D ‘Access to healthcare records after death: balancing confidentiality with appropriate disclosure’ (2007) 297 Journal of the American Medical Association 634 at 635.CrossRefGoogle Scholar

113. Brazier above 6, at 567 notes the gradual move in the law of negligence towards recognising injury caused by psychiatric harm in the context of actions for nervous shock.

114. See relational theorists referred to in n 102 above.

115. Sandel above n 102, p 62.

116. See text to n 34 above.

117. See generally R Toulson and C Phipps Confidentiality (London: Thompson Sweet and Maxwell, 2nd edn, 2006), Ch.6.

118. See W v Egdell [1990] Ch 359; see Toulson and Phipps, ibid, p 141.

119. Campbell, above n 65, at [51] per Lord Hoffmann.

120. Ibid.

121. Ibid, at [55]. See further Sedley LJ in London Regional Transport v The Mayor of London [2001] EWCA Civ 1491, [2003] EMLR 88 at [57].

122. Campbell, ibid, at [20].

123. Ibid, at [157].

124. Ibid.

125. Ibid.

126. Above n 40, at [59].

127. Ibid.

128. Ibid, [58].

129. Ibid.

130. Eg Personal Health Information Protection Act 2004 (Ontario); Health Information Act 2000 (Alberta); Health Information Protection Act 1999 (Saskatchewan); Personal Health Information Act 1997 (Manitoba); Health Records and Information Privacy Act 2002 (New South Wales); Health Records Act 2000 (Victoria).

131. See K Mason and G Laurie Mason and McCall Smith's Law and Medical Ethics (Oxford: Oxford University Press, 7th edn, 2006) p 286.

132. AHRA, s (3)(1)(f).

133. AHRA, s 8(1).

134. AHRA, s 1(1).

135. AHRA, s 2(1).

136. The fact that a third party could be identified does not prevent disclosure where the third party has consented to the disclosure or where the third party is a health professional who has been involved in the care of the patient (s 5 (2)).

137. Section 5(4).

138. Access to Health Records (Control of Access) Regulations 1993, SI 1993/746. Access to this information is covered by Human Fertilisation and Embryology Act 1990 as amended by the Human Fertilisation and Embryology (Disclosure of Information) Act 1992 and the Human Fertilisation and Embryology Act 2008. This legislation provides a statutory right of access to identifying information about donors to donor-conceived people where the donor donated after 1 April 2005 or where the donor retrospectively removed anonymity.

139. Above n 75.

140. Ibid, para 30.

141. Ibid, para 30.

142. M Brazier and E Cave Medicine, Patients and the Law (London: Penguin, 4th edn, 2007) p 95.

143. It should be noted, however, the issue was not identified as problematic in the 86 responses to the GMC consultation on its Guidance on Confidentiality conducted in 2008: summary of responses is available at http://www.gmc-uk.org/confidentiality/docs/Summary_of_inital_consultation_analysis.pdf.

144. See Bonnici and Choong, above n 5, 155.

145. FOI Act 2000, s 21; see, eg, Liverpool Women's NHS Foundation Trust FS50127442, 19 February 2007.

146. As of September 2009; see R. Vluegels, available at http://www.wobsite.be.

147. See generally MacDonald, J, Crail, R and Jones, C (eds) The Law of Freedom of Information (Oxford: Oxford University Press, 2nd edn, 2009).Google Scholar In Scotland, the relevant legislation is the Freedom of Information (Scotland) Act 2002.

148. FOI Act 2000, s 1(1).

149. The others were Ireland and Sweden.

150. See Rouille-Mirza, S and Wright, J ‘Comparative study on the implementation and effect of Directive 95/46/EC on data protection in Europe: general standards’ in Beyleveld, D et al (eds) The Data Protection Directive and Medical Research across Europe (Aldershot: Ashgate, 2004) pp 131138.Google Scholar

151. Freedom of Information (Scotland) Act 2002, s 38(1)(d).

152. See Mr W Hunter Watson and the Scottish Commission for the Regulation of Care Decision 066/2008, 17 June 2008 in which a request for access to health records made by the representative of the son of a woman who had died in a care home was refused on the basis of the exemption in s 38(1)(d).

153. Freedom of Information (Scotland) Act 2002, s 52(1)(b).

154. Freedom of Information Act (Cth) 1982, s 41(1).

155. New South Wales: Freedom of Information Act 1989, Sch 1, cl 6(1); Victoria: Freedom of Information Act 1982, s 33(1); Queensland: Freedom of Information Act 1991, s 44(1); South Australia: Freedom of Information Act 1991, Sch 1, cl 6(1); Western Australia: Freedom of Information Act 1992, Sch 1, cl 3; Tasmania: Freedom of Information Act 1991, s 5(4); Australian Capital Territory: Freedom of Information Act 1989, s 41(1); Northern Territory: Northern Territory Information Act 2002, s 4.

156. Access to Information Act 1985, s 19; Privacy Act 1985, s 3.

157. While the personal information exemptions in provincial Canadian FOI statutes do not expressly apply to information relating to deceased persons, the Information Commissioners of a number of provinces have taken the view that such information does come within the scope of the exemptions: see Ontario Information and Privacy Commissioner, Order No P-62, 3 November 1992; British Columbia Information and Privacy Commissioner, Order 02-44, 10 September 2004; Alberta Freedom of Information and Privacy Commissioner, Order 2000-12, 23 August 2000; Review Report FI-05-47 made under the Nova Scotia Freedom of Information and Protection of Privacy Act, 30 September 2005.

158. Official Information Act 1992, s 9(2)(a).

159. Freedom of Information Act 1997, s 28.

160. As discussed further in text to n 189 below, in some instances, ‘public’ interests have been held to encompass more personal interests of the applicant.

161. See Carter, M and Bouris, A Freedom of Information: Balancing the Public Interest (London: The Constitution Unit, University College London, 2006).Google Scholar

162. See, in particular, the personal information exemptions found in the federal, New South Wales, Victoria, South Australia, Tasmania and Australian Capital Territory FOI Acts.

163. Note, however, that substantial changes to the treatment of personal information were introduced by the Queensland Right to Information Act 2009; the New South Wales Government Information (Public Access) Act 2009.

164. See Paterson, M Freedom of Information and Privacy in Australia (Brisbane: LexisNexis Butterworths, 2005) p 241.Google Scholar

165. Official Information Act 1982, s 9(1).

166. See text following n 41 above.

167. See The National Archives FS50101391, 11 December 2006; County Durham NHS Primary Care Trust FS50111780, 26 February 2007; Dr IM Gilmour FS500143838, 8 August 2007; The Office for National Statistics FS50147944, 23 October 2007; Trafford Metropolitan Borough Council FS50153179, 27 November 2007; Ministry of Justice FS50108240, 29 November 2007; NHS London FS50146982, 3 December 2007; East London and the City Mental Health NHS Trust FS50101567, 3 December 2007; Walsall NHS Teaching PCT FS50163705, 13 December 2007; Hounslow NHS Primary Care Trust FS50133293, 19 March 2008; Hertfordshire Partnership NHS Trust FS501124800, 2 June 2008; Health and Safety Executive FS50104541, 21 July 2008; Ministry of Justice FS50121803, 14 April 2009; Mayday Healthcare NHS Trust FS50225818, 16 September 2009.

168. Note the limitations on persons permitted to apply for access outlined in text to n 132 above.

169. See County Durham NHS Primary Care Trust ; Dr IM Gilmour; NHS London ; East London and the City Mental Health NHS Trust ; Walsall NHS Teaching PCT ; Hounslow NHS Primary Care Trust ; Hertfordshire Partnership NHS Trust, all above n 167. The cases in which the confidentiality exemption was found to be inapplicable included two cases concerning requests for access to census data: see The National Archives, above n 167; The Office for National Statistics, above n 167. The requested information was not considered sufficiently private to qualify. However, the Commissioner indicated that census information that related to health or infirmity (The National Archives, para 31) or revealed a relationship between individuals (The Office for National Statistics, para 50) would be sufficiently private to warrant protection.

170. County Durham NHS Primary Care Trust, ibid.

171. Dr IM Gilmour ; Trafford Metropolitan Borough Council, above n 167.

172. Ministry of Justice (2007), NHS London ; East London and the City Mental Health NHS Trust ; Walsall NHS Teaching PCT ; Hounslow NHS Primary Care Trust ; Hertfordshire Partnership NHS Trust ; Ministry of Justice (2009); Mayday Healthcare NHS Trust, all above n 167.

173. Hounslow NHS Primary Care Trust, above n 167; Hertfordshire Partnership NHS Trust, above n 167.

174. See text to n 59 above.

175. See also Epsom & St Helier University Hospital NHS Trust, above n 55; County Durham NHS Primary Care Trust, above n 167; Dr IM Gilmour, above n 167; Hertfordshire Partnership NHS Trust, above n 167; Ministry of Justice (2009), above n 167; Mayday Healthcare NHS Trust, above n 167. Contrast the position taken by the Scottish Information Commissioner in Mrs G and Aberdeen City Council Decision 029/2008, 21 February 2008, which regards other surviving relatives as being able to bring the action.

176. Above n 167.

177. Ibid, para 46.

178. FS50066753, 21 February 2006.

179. Derry City Council and Information Commissioner Appeal Number: EA/2006/0014, 11 December 2006.

180. Ibid, para l. See discussion of judicial endorsement of this approach in text to n 121 above.

181. See text to n 160 above.

182. Above n 179, p 29.

183. County Durham NHS Primary Care Trust, above n 167, para 31; Dr IM Gilmour, above n 167, para 47; Walsall NHS Teaching PCT, above n 167, para 41.

184. Above n 167, para 48.

185. See text to n 118 above.

186. Petrowski, above n 83; see discussion in Sperling, above n 7, p 191.

187. See Australian federal FOI Act 1982, s 27A (legal personal representative); Queensland FOI Act 1992, s 51 (closest relative), New South Wales FOI Act 1989, s 31 (closest relative), Northern Territory Information Act 2002, s 30 (the administrator or executor of the deceased person's estate or a person who has a sufficient interest in the application or complaint).

188. See factors mentioned in text to n 61 above.

189. Bluck, above n 41, para 13.

190. (1990) 170 CLR 1 at para 18 per Mason CJ See also Sinclair v Mining Warden at Maryborough (1975) 132 CLR 473 at 487.

191. (1994) 2 QAR 293, para 164.

192. Above n 167. See also Re Epsom & St Helier University NHS Trust, above n 55, para 23; Dr IM Gilmour, above n 167, para 33, Walsall NHS Teaching PCT, above n 167, para 27.

193. Above n 167, para 19.

194. [2008] VSCA 218 (5 November 2008).

195. [2007] VSC 522 (13 December 2007) per Hansen J.

196. Victoria Police v Marke, above n 194, para 86. This approach was followed by the New South Wales Administrative Decisions Appeals Tribunal in Department of Education and Training v GJ [2009] NSWADTAP 33, 29 May 2009.

197. Freedom of Information and Protection of Privacy Act 1990 (FOIPP Act), s 21(3).

198. See text to n 34 above.

199. See Tarasoff v Regents of the University of California 17 Cal 3d 425 (1976); W v Egdell [1990] Ch 359.

200. A similar provision is contained in the Ontarian local government measure, the Municipal Freedom of Information and Protection of Privacy Act 1990 (MFOIPP).

201. This followed criticism of the earlier provisions in the Standing Committee of the Legislative Assembly Report on the Municipal Freedom of Information and Protection of Privacy Act (1994) and the Annual Report of the Information and Privacy Commissioner of Ontario (1999) pp 7–8.

202. FOIPP Act, s 21(4)(d); MFOIPP, s 14(4)(c).

203. See Information and Privacy Commissioner of Ontario, Order MO-2237 Barrie Police Services Board 19 October 2007; Information and Privacy Commissioner of Ontario, Order MO-2245 Halton Regional Police Services Board 9 November 2007; Information and Privacy Commissioner of Ontario, Order MO-2270 Toronto Police Services Board 7 February 2008; Information and Privacy Commissioner of Ontario, Order MO-2290 Durham Regional Police Services Board 11 April 2008; Information and Privacy Commissioner of Ontario, Order MO-2292 Ottawa Police Services Board 14 April 2008; Information and Privacy Commissioner of Ontario, Order MO-2306 Hamilton Police Services Board 22 May 2008; Information and Privacy Commissioner of Ontario, Order MO-2387 Peel Regional Police Services Board 28 January 2009; Information and Privacy Commissioner of Ontario, Order MO-2420 Peel Regional Police Services Board 22 May 2009; Order MO-2430 Halton Regional Policy Services Board 16 June 2009; Information and Privacy Commissioner of Ontario, Order PO-2821 Ministry of the Attorney General 3 September 2009; Information and Privacy Commissioner of Ontario, Order PO-2850 Ministry of Community Safety and Correctional Services 30 November 2009. In Information and Privacy Commissioner of Ontario, Order MO-2401 Peel Regional Services Board 28 January 2009, the Commissioner decided that the exception was not applicable on the grounds that a significant amount of the information had already been disclosed to the applicant and that which continued to be withheld either did not specifically relate to the deceased or did not shed light on his death.

204. Order MO-2237 Barrie Police Services Board 19 October 2007, p 19.

205. Ibid.

206. See text following n 72 above.

207. In Canada, the Privacy Act 1985, s 3 provides that personal information does not include information about an individual who has been dead for more than 20 years and the Freedom of Information and Protection of Privacy Act of Ontario, s 2(2) provides that personal information does not include information about an individual who has been dead for more than 30 years. In Scotland, the protection of health records under the personal information exemption falls away after 100 years: FOI Act (Scotland) 2002, s 52(1)(b).

208. See text to n 46 above.