Genetic Privacy and Non-discrimination Bill 1998 (Cth)

Additional comments
Senator Natasha Stott Despoja
Australian Democrats
March 1999

“Nowhere is the impact of modern science on our lives and ideas of what we are as a species more profound than in the discipline of genetics, the science of heredity” (D Suzuki, Inventing the future: reflections on science, technology and nature (Allen & Unwin, St Leonards, 1990), at page 21.)

Table of Contents

1.	Summary		1
2.	Structure of report	3
3.	Science and the legislature	3
	3.1	Genetic technology – a challenge worth debating	3
	3.2	Science and technology are political	4
	3.3	New technologies have social consequences	8
4.	Privacy and non-discrimination in Australia	11
	4.1	Privacy in Australia	11
	4.2	What is genetic privacy?	20
	4.3	What is genetic discrimination?	22
	4.4	When to regulate?	23
	4.5	Existing regulation in Australia	27
	4.6	Is legislation necessary?	32
	4.7	International developments	34
	4.8	History of this Bill	36
	4.9	Why this Bill?	37
5.	Policy issues raised by this Bill	38
	5.1	Constitutional powers	39
	5.2	DNA samples	40
	5.3	Confidentiality and consent	41
	5.4	Counselling	45
	5.5	Collection, storage and analyses	46
	5.6	Discrimination prohibited	48
		5.6.1	Rapid pace of technology	49
		5.6.2	Genetic determinism	50
		5.6.3	Reliability	51
		5.6.4	What is “healthy”?	52
	5.7	Employment discrimination	53
	5.8	Insurance discrimination	59
	5.9	Research	63
	5.10	Other breaches and penalties	67
	5.11	Genetic information and the criminal law	67
6.	Other issues	68
	6.1	Donated eggs, sperm, embryos, etc.	68
	6.2	Consultation with States and Territories	69
	6.3	Indigenous issues	69
	6.4	Reproductive choices	70
7.	Conclusions	70

APPENDIX	Summary of submissions	72
	1	General comments about the Bill	72
	2	Constitutional issues	77
	3	State/Territory issues	77
	4	Legislating ethics	78
	5	Definitions	79
	6	Individual autonomy	82
	7	Privacy	83
	8	Inspection, copying of records and correction	87
	9	Collection, storage and analysis	88
	10	Counselling	91
	11	Consent	92
	12	Testing	93
	13	Ownership of biological materials	94
	14	Use of sample for other purposes	95
	15	Discrimination	95
	16	Employment discrimination	97
	17	Insurance discrimination	98
	18	Research	103
	19	Miscellaneous	105
	20	Privacy and discrimination complaints	106
	21	Damages	107
	22	Other issues which should be addressed	107