1 T Beauchamp and Childress, J Principles of Biomedica1 Ethics (New York: Oxford University Press, 5th edn, 2001 Google Scholar).

2 Re C [1994] 1 All ER 819; Re MB [1997] 2 FCR 541.

3 F v Berkshire Health Authority [1989] 2 All ER 545; Airedale NHS Trust v Bland [1993] AC 789.

4 O O'Neill Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002) p 2.

5 O'Neill, n 4 above, p 23, argues that autonomy is understood in medical ethics as a matter of individual capacity for independent decisions and action, as relational, that is as autonomy from something, as selective and as graduated.

6 L Skene ‘Genetic Secrets and the Family: A response to Bell and Bennett’ (2001) 9 Med L Rev 162.

7 In Fitzpatrick v Sterling Housing Association Ltd [1999] 3 WLR 1113, the House of Lords held that a same-sex partner could be a member of the family of the other partner. This was in the context of legislation, which provided for rights of succession to a tenancy of ‘a person who was a member of the original tenant's family’. ‘Family’ can be argued to include partners, and the tests are mutual interdependence, shared lives, caring and committed relationships. Current discussions favour the use of the term ‘next of kin’, which is taken to cover a wider range of loved ones than ‘family’. See Royal Liverpool Children's Inquiry (2001) (the Alder Hey Report), available at http://www.rclinquiry.org.uk

8 A Buchanan and Brock, D Deciding for Others: the ethics of surrogate decision making (Cambridge: Cambridge University Press, 1989) p 146 Google ScholarPubMed.

9 GMC Confidentiality, available at http://www.gmc-uk.org.uk

10 J Hardwig ‘What about the Family?’ (1990) Hastings Center Report, March-April 5 argues that ‘there is no way to detach the lives of patients from the lives of those who are close to them’.

11 Naffine, N Law and the Sexes: Explorations in Feminist Jurisprudence (Sydney: Allen and Unwin, 1990 Google Scholar); Beck, U and Beck-Gernsheim, E The Normal Chaos of Love (Cambridge: Polity Press, 1995 Google Scholar).

12 Nelson, H Lindemann and Nelson, J Lindemann The Patient in The Family (New York: Routledge, 1995 Google Scholar) to whom we refer in the text as ‘the Lindernann Nelsons’.

13 The Lindemann Nelsons, n 12 above, p 84.

14 Principles of Biomedical Ethics (New York: Oxford University Press, 4th edn, 1994). The 4th edn (1994) is under scrutiny here.

15 See the Lindemann Nelsons, n 12 above, p 48.

16 The Lindemann Nelsons, n 12 above, p 41.

17 J Nedelsky ‘Reconceiving Autonomy’ (1989) 1 Yale J Law and Feminism 7.

18 See the Lindemann Nelsons, n 12 above, p 60.

19 The Lindemann Nelsons, n 12 above, p 63.

20 See the Hastings Center Reports 14 (1984) and 26 (1996).

21 R Botelho et al’ Family Involvement in routine health care: a survey of patients' behaviours and Preferences' (1996) 42 J Family Practice 572 indicate that a majority of patients prefer relatives to accompany them to the examination room — once the private sphere of doctors and patients.

22 We do not gloss over issues of power within the family. We argue that recognition that families are involved in medical decisions gives power to those whose assent to decisions on which they are not consulted may otherwise be taken for granted.

23 Dworkin, G The Theory and Practice of Autonomy (Cambridge: Cambridge University Press, 1988 CrossRefGoogle Scholar); R Faden and T Beauchamp The History and Theory of Informed Consent (New York: Oxford University Press, 1986); see also O'Neill, n 4 above, para 1.6.

24 O'Neill, n 4 above, p 74.

25 ’Family’ and’ relatives' as used in this paper are not necessarily synonymous, but may fall under the more general term ‘loved ones’. We recognise that, in general, medical law gives a role to relatives in organ donation and decision-making for incompetent patients, and that where we talk of shared genes, blood relatives are designated. Further, it is not intended to suggest that loved ones share the same viewpoints, just as they do not always share genes.

26 There is a dispute whether individuals must exercise their autonomy rationally or whether they can act foolishly so long as they do not harm others. This debate exists in the context of the patient's right not to know genetic information. For an argument which supports rational choice see R Rhodes ‘Genetic links, family ties, and social bonds: rights and responsibilities in the face of genetic knowledge’ (1998) 23 J Medicine & Philosophy 10; and for the opposite view see T Takala ‘The right to genetic ignorance confirmed’ (1999)13 Bioethics 288.

27 Frazer, E and Lacey, N The Politics of Community (Heme1 Hempstead: Harvester, 1993) pp 41–53 Google Scholar.

28 M Sandel Liberalism and the limits of justice (Cambridge: Cambridge University Press 1982) p 103.

29 For a critique of the liberal legal protagonist, ‘already endowed with a particular social and political personal before he even enters his society’ and antisocial’, see N Naffine ‘In praise of legal feminism’ (2002) 22 LS 71 at 83.

30 J Raz The Morality of Freedom (Oxford: Clarendon Press 1986) pp 370–373.

31 G Dworkin The Theory and Practice of Autonomy (New York: Cambridge University Press, 1988) pp 18–19.

32 See Beauchamp and Childress, n 1 above, p 58.

33 This notion is borrowed from J Bergsma and D Thomasma Autonomy and Clinical Medicine (Boston: Kluwer Academics, 2000).

34 See Naffine, n 11 above, p 83, citing, Blackstone, W Commentaries on the Laws of England, reprint of the 1st edn, 1765 (Chicago: Chicago University Press, 1979) vol 1, p 121 Google Scholar.

35 Dworkin, R Taking Rights Seriously (Cambridge: Harvard University Press, 1977 Google ScholarPubMed).

36 In this fiction of the ‘original position’ the individuals are under the ‘veil of ignorance’: see Rawls, J A Theory of Justice (Cambridge: Harvard University Press, 1971) p 12 Google Scholar.

37 D Bell Communitarianism and its Critics (Oxford: Clarendon Press, 1993) p 6.

38 See Frazer and Lacey, n 27 above, p 108.

39 See Bell, n 37above, pp 133–144.

40 Bell, n 37 above, p 66.

41 Bell, n 37 above, pp 93–96.

42 Etzioni, A The Spirit of Community (London: Fontana Press, 1995 Google Scholar).

43 Fried, C An Anatomy of Values: Problems of Personal and Social Choice (Cambridge: Harvard University Press, 1970 CrossRefGoogle Scholar), defines intimacy as ‘the sharing of information about one's actions, beliefs, or emotions which one does not share with all, and which one has the right not to share with anyone’.

44 See the Lindemann Nelsons, n 12 above, p 76.

45 Blustein, J Care and Commitment (Oxford: Oxford University Press, 1991) pp 152–153 Google Scholar.

46 Blustein, n 45 above, p 180.

47 A Donchin ‘Autonomy and Interdependence: Quandaries in Genetic Decision Making’ in C Mackenzie and N Stoljar (eds) Relational Autonomy (New York: Oxford University Press 2000) pp 236, 237–240.

48 Hardwig, n 10 above, p 6, argues that to exclude the family's welfare is ‘irresponsible’.

49 Human Tissue Act 1961, as amended by the Corneal Tissue Act 1986.

50 D Price Legal and Ethical Aspects of Organ Transplantation, (Cambridge: Cambridge University Press, 2000) ch 2.

51 J Montgomery Health Care Law (Oxford: Oxford University Press, 2nd edn, 2002) p 443.

52 S Eaton ‘The Subtle Politics of Organ Donation’ (1998) 24 J Medical Ethics 166 at 167.

53 Human Tissue Act 1961, s 1(1), as amended, provides: ‘If any person, either in writing at any time or orally in the presence of two or more witnesses during his last illness, has expressed a request that his body or any specified part of his body be used after his death for therapeutic purposes or for purposes of medical education or research, the person lawfully in possession of his body after his death may, unless he has reason to believe that the request was subsequently withdrawn, authorise the removal from the body of any part or, as the case may be, the specified part, for use in accordance with the request.’

54 Human Tissue Act 1961, s 1(2)Google ScholarPubMed, as amended, provides: ‘Without prejudice to the foregoing subsection, the person lawfully in possession of the body of a deceased person may authorise the removal of any part from the body for use of the said purposes if, having made such reasonable enquiry as may be practicable, he has no reason to believe—

^54a that the deceased had expressed an objection to his body being so dealt with after his death, and had not withdrawn it; or

^54b that the surviving spouse or any surviving relative of the deceased objects to the body being so dealt with.’

55 Eaton, n 52 above; Montgomery, n 51 above, p 452; P D G Skegg Law, Ethics and Medicine (Oxford: Oxford University Press, 1984) pp 243–252.

56 According to the Department of Health, 5,000 patients in the UK are waiting for organs to be donated: http://www.nhsorgandonor.net/index.html

57 Price, n 50 above, chs 2 and 3.

58 United Kingdom Transplant Support Service Authority Booklet Questions and Straight Answers About Transplants (4th edn, 1998).

59 Price, n 50 above, p 96, suggests that, arguably, hospital practice needs to change.

60 J K Mason and G T Laurie ‘Consent or Property? Dealing with the Body and its Parts in the Shadow of Bristol and Alder Hey’ (2001) 64 MLR 710.

61 Kennedy, I and A Grubb Medical Law (London, Butterworths, 3rd edn, 2000) ch 15, p 1844 Google Scholar.

62 See Montgomery, n 51 above, p 451.

63 Skegg, n 55 above, p 243.

64 C Gray ‘Review of M. Lock, Twice Dead: Organ Transplants and the Reinvention of Death’ (2002) 324 BMJ 1401.

65 A Caplan’ Organ Procurement: It's Not in the Cards' (1984) 14 Hastings Center Report 9.

66 M E Hodson’ Transplantation Using Lung Lobes from Living Donors' (2000) 26 J Medical Ethics 419–421. The idea of a ‘legally required request’ was rejected by the Hoffenberg Working Party on the Supply of Donor Organs for Transplantation (1987).

67 S 1 (2) of the Human Tissue Act 1961 requires relative involvement, whereas s 1 (1) does not.

68 Report of the Working Party on the ‘Supply of Donor Organs for Transplantation’ (1987) chaired by Sir Raymond Hoffenberg. Extract in Kennedy and Grubb, n 61 above, pp 1849–1850.

69 See Price, n 50 above.

70 Mason and Laurie, n 60 above, p 717.

71 Human Tissue Act 1961, s 1(4)Google ScholarPubMed.

72 D Price ‘Organ transplant initiatives: the twilight zone’ (1997) 23 J Medical Ethics 170.

73 R. Hoffenberg ‘Christiaan Barnard: his first transplants and their impact on the concepts of death’ (2002) 323 BMJ 1478–1480.

74 L Skene’ Proprietary rights in human bodies, body parts and tissue: regulatory contexts and proposals for new laws' (2002) 22 LS 102; Price, n 50 above, p 118, suggests that family views regarding rights to dispose of the body of a relative may be dominant in Anglo-American cultures.

75 http://www.doh.gov.uk/tissue/interimstatement.htm#12, para9.

76 http://www.bristol-inquiry.org.uk; http://www.rclinquiry.org.uk.

77 See Mason and Laurie, n 60 above, p 717.

78 M Brazier ‘Retained organs: ethics and humanity’ (2002) 22 LS 550 at 561, points out that, in succession law, there is a presumption that the wishes of the deceased are paramount.

79 Price, n 50 above, p 96, notes that in 1999 the British Medical Association (BMA) called for a presumed consent law. However, he suggests that if the express consent provision already existing in the law were followed in practice, there would be no need for a regime of presumed consent.

80 Cited by Price, n 50 above, p 107.

81 See Hodson, n 66 above.

82 See Caplan, n 65 above.

83 Caplan, n 65 above.

84 Caplan, n 65 above.

85 Re T (adult: refusal of medical treatment) [1992] 4 All ER 649 at 652–653, CA.

86 Re B (consent to treatment: capacity) [2002] 2 All ER 449.

87 We narrow our discussion to situations where the patient did not leave any advance directive or express any specific views, thus putting doctors and relatives in a dilemma on how to proceed.

88 Re F (mental patient: sterilisation) [1990] 2 AC 1 at 71, per Lord Goff.

89 Re F (mental patient: sterilisation) [1990] 2 AC 1 at 71–75, per Lord Goff.

90 Kennedy and Grubb, n 61 above, p 831.

91 Re T (adult: refusal of medical treatment) [1992] 4 All ER 649 at 653.

92 One exception is Re R (adult: medical treatment) (1996) 31 BMLR 127, where the court held that it would be lawful to withhold resuscitation and administration of antibiotics to an incompetent adult patient if one or both parents consent to it. Although this decision does not follow the current legal position, it is more balanced, as it requires doctors to share the authority to decide with the relatives.

93 Practice note (Official Solicitor: Declaratory Proceedings: Medical and Welfare Decisions for Adults who Lack Capacity) [2001] 2 FLR 158, followed by Practice Note (Fam Div: Incapacitated Adults: Declaratory Proceedings) [2002] 1 FLR 177.

94 The Official Solicitor relies on Re G (persistent vegetative state) [1995] 2 FCR 46.

95 Re T (adult: refusal of medical treatment) [1992] 4 All ER 649 at 653.

96 Airedale NHS Trust v Bland [1993] AC 789 at 869.

97 See Re G (persistent vegetative state) [1995] 2 FCR 46, where the judge, at 50, described on the one hand, the evidence given by the patient's wife, who communicated to the court what she considered to be her husband's views, while, on the other, he described the mother's own personal view regarding her son's condition.

98 Anthony Bland's father told the court that: ‘He certainly wouldn't want to be left like he is. I would feel that he should be removed and the family feel the same.’ See Airedale NHS Trust v Bland [1993] AC 789 at 797.

99 BMA Withholding and withdrawing Life-prolonging Medical Treatment (London, BMJ Books, 2nd edn, 2001).

100 BMA, n 99 above, p 52.

101 BMA, n 99 above, p 56.

102 McWhinney, I A Textbook of Family Medicine (Oxford: Oxford University Press, 2nd edn, 1997 Google ScholarPubMed) ch 10.

103 See BMA, n 99 above, p 56.

104 J K Mason, R A McCall Smith and G T Laurie Law and Medical Ethics (London: Butterworths, 6th edn, 2002) para 17.24.

105 See Re G (persistent vegetative state) [1995] 2 FCR 46.

106 We restrict our discussion in this section to incompetent adults who were competent before the occurrence of the disease or the injury.

107 Note that Lord Goff in Airedale NHS Trust v Bland [1993] AC 789 argued that continuing an invasive treatment failed to respect the dignity of Anthony Bland.

108 Dworkin, R Life's Dominion (New York: Vintage Books, 1993) ch 7, esp p 191 Google Scholar.

109 A Grubb ‘Treatment decisions: keeping it in the family’ in A Grubb (ed) Choices and Decisions in Health Care (Chichester: Wiley, 1993) p 43.

110 Re T (adult: refusal of medical treatment) [1992] 4 All ER 649.

111 See Grubb, n 109 above, p 44.

112 Grubb, n 109 above, where Grubb relies on Rehnquist J's speech in Cruzan v Director, Missouri Department of Health (1990) 58 USLW 4916 at 4922.

113 See Grubb, n 109 above, pp 45–48.

114 Grubb, n 109 above, where Grubb relies, inter alia, on Brennan J's dissenting speech in Cruzan v Director, Missouri Department of Health (1990) 58 USLW 4916 at 4932.

115 Thus, the patient's lover and not only his or her adult children can be involved.

116 In Re Y (mental patient: bone marrow donation) [1997] 2 WLR 556, the court accepted that improving the health of one family member can contribute to the function of the entire family and thus to the psychological health of the incompetent patient who was asked to donate her bone marrow.

117 Teri, C Behavioural problems in patients with Alzheimer disease and its association with caregiver distress’ (1997) 11 (Supp4)Google ScholarPubMed Alzheimer's Disease and Associated Disorders 35; Logsdon, R G et al Wandering a significant problem among community-residing individuals with Alzheimer disease’ (1998) B 53(5)Google Scholar J Gerontology 294.

118 C Donaldson et al ‘Determinants of cancer stress in Alzheimer disease’ (1998) 13 Int J Geriatric Psychiatry 248.

119 Anderson, J Dunkin and Hanley, C Dementia caregiver burden: a review of the literature and guideline for assessment and intervention’ (1998) 51 (Supp 1)Google Scholar Neurology S53.

120 Superintendent of Belchertown State School v Saikewicz (1977) 373 Mass 728; Re Estate of Longeway (1989) 549 NE 2d 292 at 299; Kennedy and Grubb, n 61 above, p 837–838, argue that following Re T and Bland this test may be seen as part of the’ best interests' test and that the door is open for the courts to adopt it. See also their commentary: ‘Withdrawal of artificial hydration and nutrition: incompetent patient’ (1993) 1 Med L Rev 359 at 363.

121 Obviously, the substitute judgment test cannot be applied where no views, wishes or thoughts have been expressed by the patient.

122 President's Commission for the study of ethical problems in medicine and biomedical behavioural research Making Health Care Decisions, Volume One: Report (1983) pp 181–184.

123 The importance of the family is first shown in Re Quinlan (1976) 355 A 2d 647; the assumption that no one knows the patient as the family does is expressed in Re Jobes (1987) 108 NJ 394.

124 See the Lindemann Nelsons, n 12 above, p 87.

125 See Beauchamp and Childress, n 1 above, pp 99–100.

126 See the Lindemann Nelsons, n 12 above, pp 87 and 94.

127 Harper, P Practical Genetic Counselling (Oxford, Butterworth-Heinemann, 5th edn, 1998) p 341 Google Scholar defines a mutative gene as a gene which has undergone a change from a normal to an altered form.

128 Harper, n 127 above, pp 3–19. Although not all genetic diseases operate in the same way, a biological specification is not essential because as we shall see, even in the most straightforward cases the law fails to provide the family members with a legal remedy.

129 G T Laurie ‘The most personal information of all: an appraisal of genetic privacy in the shadow of the Human Genome Project’ (1996) 10 Int J Law, Policy & the Family 74.

130 J Fanos and J Johnson’ Perception of carrier status by Cystic Fibrosis siblings' (1995) 57 Am J Human Genetics 431.

131 We focus on the relatives' right to know genetic information and not on their right not to know.

132 It should be noted though that the genetic risk depends on the blood relations. Eg the patient's father is more exposed to a genetic risk then the patient's second cousin.

133 We limit the discussion to circumstances where the relatives are not the doctor's patients but registered at another clinic. This scenario, when the relatives are not the patients of the same doctor, is difficult as it is.

134 Kennedy and Grubb, n 61 above, p 278.

135 See Beauchamp and Childress, n 1 above, pp 165–176.

136 English law usually holds the wrongdoer as responsible for the damage:see Smith v Littlewoods Organisation Ltd [1987] 1 AC 241.

137 Smith v Leurs (1945) 70 CLR 256 at 261–262.

138 Only when the doctor controls a patient in custody may the doctor be held liable for the patient's conduct: Dorset Yacht w Home Office [1970] AC 1004; Carmarthenshire County Council v Lewis [1956] AC 549. However, this exception does not apply here, as the doctor neither controls the patient nor the transmission of the disease from patients to offspring.

139 Palmer v Tees Health Authority [1998] Lloyd's Rep Med 447 at 461: Gage J at first instance stated explicitly that if the victim were identifiable, he would have found that the proximity requirement was satisfied. Andrew Grubb suggests that the Court of Appeal would have ruled the same. See: ‘Medical Negligence: Duty to third party’ (1999) 7 Med L Rev 331 at 335. As for policy reasons against the imposition of a duty of care, Grubb argues that they ‘simply may not appeal to a future appellate court…’: See Grubb, A Principles of Medical Law: Second Cumulative Supplement (Oxford: Oxford University Press, 1999) p 32 Google Scholar.

140 K v Secretary of State for the Home Office [2001] CP Rep 39, where Smith J stressed that the police in Osman v Ferguson [1993] All ER 344 was aware that the family was at risk of a serious harm from the schoolteacher the police could not detect and arrest.

141 See Palmer v Tees Health Authority [1998] Lloyd's Rep Med 447 at 359, per Stuart-Smith LJ.

142 C Ngwena and R Chadwick ‘Genetic information and the duty of confidentiality: ethics and law’ (1993) 1 Med L Int 73 at 79.

143 See Palmer v Tees Health Authority [1998] Lloyd's Rep Med 447 at 359.

144 See Grubb, n 139 above; M Lunney and K Oliphant Tort Law (Oxford: Oxford University Press, 2000) p 453.

145 Oman v UK (1998) 5 BHRC 293; Z v UK [2001] 2 FCR 246.

146 See eg Lord Browne-Wilkinson's speech in Barrett v Enfield London Borough Council [1999] 3 WLR 79; Rt Hon Lord Hoffmann’ Human Rights and the House of Lords' (1999) 62 MLR 159.

147 Stovin v Wise [1996] AC 923; [1996] 3 All ER 801.

148 The legality of doctors' failure to act following the implementation of the Human Rights Act 1998 was recently affirmed in a different area of medical law in a case concerns withdrawal of life-sustaining treatment. See: NHS Trust A v M & NHS Trust B v H [2001] Lloyd's Rep Med 28.

149 W v Egdell [1989] 1 All ER 1089 at 1102; X v Y [1988] 2 All ER 648.

150 Although some see confidentiality as application of patient's autonomy: see: Mason, McCall Smith and Laurie, n 104 above, p 240.

151 X v Y [1988] 2 All ER 648; W v Egdell [1989] 1 All ER 1089, Ch D; [1990] 1 All ER 835, CA.

152 K Stern’ Confidentiality and Medical Records' in I Kennedy and Grubb, A A (eds) Principles of Medical Law (Oxford: Oxford University Press, 1998) p 496 Google Scholar.

153 A-G v Guardian Newspapers (No 2) [1988] 3 WLR 776 at 794.

154 General Medical Council Confidentiality: Protecting and providing information (2000); W v Egdell [1989] 1 All ER 1089, Ch D, [1990] 1 All ER 835, CA; R v Crozier [1991] Crim LR 138; (1990) 8 BMLR 128; Re C [1991] 2 FLR 478; [1991] 7 BMLR 138.

155 There is no relevant English authority on this point. Two US courts did not follow the decision in Tarasoff v Regents of the Univ ersity of California (1976) 551 P 2d 334, which imposed a legal duty on a psychiatrist to breach his patient's confidentiality. In Pate v Threlkel (1995) 661 So 2d 278, the court held that though the doctors owed a duty of care to the patient's children they were not required to breach the duty of confidence, while in Safer v Pack (1996) 677 A 2d 1188, the court left this question open and held that there might be circumstances where the doctor would have to approach the relatives when the patient refuses to inform them and thus to breach his duty to the patient.

156 See Laurie, n 129 above, p 87.

157 J Benson and N Britten’ Respecting the autonomy of cancer patients when talking with their families: qualitative analysis of semi-structures interviews with patients' (1996) 313 BMJ 729.

158 CJ Lako et al’ Handling of confidentiality in general practice: a survey among general practitioners in the Netherlands' (1990) 7 Family Practice 34; Lako, C J et al Confidentiality in medical practice’ (1990)31 (2)Google ScholarPubMed J Family Practice 167; and, in the context of genetics, G Geller et a1 ‘Physicians' attitudes towards disclosure of genetic information to third parties' (1993) 21 J Law, Medicine & Ethics 238.

159 BMA Human Genetics: choice and responsibility (Oxford: Oxford University Press, 1998).

160 BMA, n 159 above, p 22.

161 See also The Nuffield Council on Bioethics Genetic screening (1993) ch 5.

162 R Rhodes ‘Genetic links, family ties and social bonds: rights and responsibilities in the face of genetic knowledge’ (1998) 23 J Medicine & Philosophy 10.

163 A Sommerville and V English ‘Genetic privacy: orthodoxy or oxymoron?’ (1999) 25 J Medical Ethics 144.

164 See Laurie, note 129 above, p 87; and Ngwena and Chadwick, n 142 above, p 86.

165 G Laurie ‘Challenging Medical-Legal Norms: The role of autonomy, confidentiality and privacy in protecting individual and familial group rights in genetic information’ (2001) 22 J Legal Medicine 1 argues that autonomy and confidentiality do not give satisfactory answers to conflicts over genetic information and instead he relies on privacy.

166 R Beeson et al’ Loneliness and depression in caregivers of persons with Alzheimer's disease or related disorders' (2000) 21 Issues in Mental Health Nursing 779.

167 Hallowell, N Doing the right thing: genetic risk and responsibility’ (1999) 21(5)Google Scholar Sociology of Health & Illness 597; N Hallowell et al ‘Surveillance or surgery? A description of the factors that influence high risk premenopausal women's decisions about prophylactic oophorectomy’ (2001) 38 J Medical Genetics 683.

168 Lehmann, L S et al Disclosure of familial genetic information: perception of a duty to inform’ (2000) 109(9)Google Scholar Am J Medicine 705.

169 See BMA, n 159 above, p 22.

170 The Nuffield Council on Bioethics Genetic screening (1993) p 1.

171 Laurie, G T Obligations arising from genetic information-negligence and the protection of familial interests’ (1999) 11(2)Google Scholar CFLQ 109 at 117.

172 G T Laurie Genetic Privacy (Cambridge: Cambridge University Press, 2002).

173 Such a model is presented in L Skene ‘Patients' rights or family responsibilities?’ (1998) 6 Med L Rev 1.

174 P D Toon and Southgate LJ ‘The doctor, the family and the relative: an exploratory survey of doctor-relative relationship’ (1987) 4 Family Practice 207.

175 J S Mill On Liberty (London, 1859) in J Gray (ed) John Stuart Mill, On Liberty and Other Essays (Oxford: Oxford University Press, 1991).

176 See Hardwig, n 10 above.

177 C Charles et al ‘What do we mean by partnership in making decisions about treatment?’ (1999) 319 BMJ 780.

178 C Charles et al ‘Decision-making in the physician-patient encounter: what does it mean? (Or it takes at least two to tango)’ (1997) 44 Social Science & Medicine 681.

179 Charles, n 178 above, p 685; and also Charles, n 177 above, p 782.

180 American Medical Association, Council on Scientific Affairs’ Physicians and Family Caregivers’ (1993) 269(10)Google ScholarPubMed J Am Medical Association 1282.

181 Re JT (adult: refusal of medical treatment) [1998] 1 FLR 48 shows that the courts are aware of the involvement of the patient's family in treatment and care decisions.

182 Recent decisions, especially those held by Dame Butler-Sloss P incline towards implementation of a partnership model: see eg Re B (consent to treatment: capacity) [2002] 2 All ER 449. These decisions, which claw back power from doctors, aim to promote patients' rights. Thus, the next stage, that of securing family members' rights is yet to be dealt with.

183 S Minuchin Families and Family Therapy (Cambridge, Mass: Harvard University Press, 1974) pp 47–48.