Introduction

5.1 The Terms of Reference for this Inquiry ask whether, and to what extent, a regulatory framework is required to protect the privacy, and protection from inappropriate discriminatory use, of human genetic samples and information. As noted in IP 26:

successfully fulfilling this brief not only involves providing adequate protections against the unlawful use of genetic information, but also putting into place measures aimed at ensuring that where such information may be used lawfully, it is used properly, fairly and intelligently.^[1]