Privacy and confidentiality are conceptually different notions; however, they are inseparable from one another. While the issue of confidentiality is largely concerned with the disclosure and communication of information, privacy ‘relates less to interpersonal communications and more to the right to control information about oneself and the right to exclude others from accessing it’ [Emphasis added]: MendelsonDanuta, ‘Travels of a Medical Record and the Myth of Privacy’ (2003) 11Journal of Law and Medicine136 at 140.
2.
See BurkeWylie, ‘Genetic Testing’ (2002) 347New England Journal of Medicine1867 at 1872, in which it is argued that genetic testing is central to preventive medicine.
3.
Further, see ALRC, Essentially Yours: The Protection of Human Genetic Information in Australia Report No 96 (2003), Chapter 2.
4.
The genetic basis of almost 2000 hereditary conditions has been identified so far; however, screening tests have only been developed for a small number of those conditions: ForrestLaura, ‘Communicating Genetic Information in Families – A Review of Guidelines and Position Papers’ (2007) 15(6) European Journal of Human Genetics612.
5.
For example, in the case of Huntington's disease, where the genetic mutation is present, ‘the person's risk of Huntington's disease is virtually 100 per cent, given a normal life span’: Burke, above n 2 at 1868.
6.
OtlowskiMargaret, ‘Essentially Yours: An Overview of the ALRC/AHEC Report on the Protection of Human Genetic Information in Australia’ (2003) 12(2) Australian Health Law Bulletin20 at 21. For a critique largely supporting this view, see SkeneLoane, ‘Genetic Secrets and the Family: A Response to Bell and Bennett’ (2001) 9Medical Law Review162. For a critique asserting greater rights of the individual over the ‘communitarian project in familial genetics’, see BellDean and BennettBelinda, ‘Genetic Secrets and the Family’ (2001) 9Medical Law Review130.
7.
NHMRC, Disclosure of Genetic Information to a Patient's Genetic Relatives under Section 95AA of the Privacy Act 1988 (Cth): Guidelines to Health Practitioners in the Private Sector, Consultation Draft (2008), 19–20.
8.
Bell and Bennett, above n 6 at 156.
9.
See, for example, HarmonAmy, ‘Fear of Insurance Trouble Leads Many to Shun or Hide DNA Tests’, New York Times, 24 February 2008, 1.
10.
The Information Privacy Principles pursuant to s 14 of the Privacy Act do.
11.
There is no general duty on a health practitioner to warn a person other than their patient of imminent or genetic harm, unless required by the law. Cf the situation in the United States where such a duty to warn exists: Tarasoff v Regents of the University of California 551 P 2d 334 (1976). For further discussion on the duty to warn of genetic threats, see KeelingSharon, ‘Duty to Warn of Genetic Harm in Breach of Patient Confidentiality’ (2004) 12Journal of Law and Medicine235.
12.
NHMRC, above n 7, 7–8
13.
For further, ibid16–23.
14.
For further, ibid25–29.
15.
For further, ibid29.
16.
For further, ibid30–31.
17.
For further, ibid30–31.
18.
For further, ibid31–33.
19.
For further, ibid33–38.
20.
For further, ibid38–40. This is obviously impractical since information spreads quickly among families and it would eventually be discovered through gossip, especially where the family is not large or where suspicions already exists about the health of particular family members.
21.
For further, ibid40–41.
22.
For further, ibid41.
23.
It is not difficult to see that a private sector health practitioner can likely be sued for breach of an implied term of contract, tortious breach of confidence and/or professional negligence by a patient if the health practitioner does not lawfully discharge their duties under NPP 2.1(ea) under the draft guidelines and unlawfully discloses their genetic information to at-risk relatives contrary to their wishes and no lawful justification exists warranting such disclosure. There could also be professional misconduct consequences for the health practitioner. For further, see McIlwraithJanine and MaddenBill, Health Care and the Law (4th ed, 2006).
