Essentially Yours

1.30  The Inquiry has decided to name this final Report Essentially Yours. In part, this reflects the fact that every good pun on the word ‘gene’ already has been used. More seriously, the Inquiry wished to use a title that clearly signified some of the central tenets of this Inquiry: that fundamental human dignity requires that individuals have a high level of control over their own genetic material, and the information derived from that material; and that human genetic information is personal, sensitive, and deserving of a high level of legal protection—except where there are compelling, countervailing reasons.

1.31  The Inquiry has recognised from the beginning that justice in this complex area is not susceptible to a simple vindication of individual rights. Rather, this is an area in which strong, competing, and even directly conflicting, interests often will arise in practice. In IP 26, the Inquiry noted that:

The major challenge for this inquiry is … to develop policies to recommend to government which meet the public appreciation of the need to foster innovations in genetic research and practice that serve humanitarian ends, while providing sufficient reassurance to the community that such innovations are subject to proper ethical scrutiny and legal control.

Although relatively easy to articulate, achieving the proper balance is difficult in practice, since various interests will compete and clash across the spectrum of activity.

1.32  For example, as discussed throughout this Report, human genetic information also has a strong familial dimension—an individual’s genetic information will usually reveal information about, and have implications for, his or her parents, grandparents, siblings, children, and generations to come. Thus, there may be circumstances in which an individual’s presumptive right to privacy, and to the confidentiality of the doctor-patient relationship, may be called into question by the competing needs of genetic relatives.

1.33  Similarly, a balance must be struck in a number of other areas—such as in the compulsory acquisition of DNA samples by law enforcement authorities, or in the ability of HRECs to waive individual consent requirements for human genetic research—in such a way as to recognise and accommodate broad social interests rather than individual ones. The creative ambiguity inherent in the word ‘essentially’—used in the title Essentially Yours—imports the suggestion that it would be misguided to become pre-occupied with absolutes, while ignoring competing interests in this area.

1.34  Finally, there was never any chance that this Report could have been entitled Essentially You. In IP 26^[23] and DP 66,^[24] and again in this Report, the Inquiry has made clear its strong opposition to any notion of ‘genetic essentialism’ informing public policy in this area. The idea of genetic essentialism (or sometimes ‘genetic determinism’ or ‘geneticisation’) is that human beings are no more than the sum total of their genes, and thus that ‘genes are everything’. As discussed in further detail in Chapters 3 and 36, such an approach improperly denies the critical importance of environmental (including cultural) factors, and their constant interaction with genetic factors, in shaping human destiny.