ABSTRACT
The so-called genetics revolution poses many challenges for both individuals and society. The potential benefits and possible drawbacks of the generation and use of genetic information are significant and may well challenge the law’s commitment to privacy1 and confidentiality, because of the familial nature of genetic information. Although medical information is generally regarded as falling into the sphere of privacy, protected by both data protection laws and the professional obligation of confidentiality, in part this is because it usually concerns no one but the patient him-or herself. Some exceptions to the general obligation of confidentiality do exist, but they are either based on the individual patient’s consent or welfare or on the wider public interest.2 By and large, then, people anticipate that health related information will, save in relatively rare circumstances, be maintained in confidence. Advances in genetics, however, are seen by some as likely to challenge this
assumption in ways previously unconsidered. For example, the world-wide development of biobanks raises issues about security of information and the involvement of (ideally) large sections of the population in clinical research for the benefit of others.3 Also, the increased availability of tests may mean that people are increasingly curious about their genetic status and may accumulate information that they would prefer not to be disclosed to others without their consent. Why is this so important in the case of genetic information? The answer is twofold. First, although it is important not to overestimate what genetic information can tell us – since it often more about
possibilities than probabilities – it is clear that predictive health information could be of interest to third parties. For example, insurance companies or employers might be tempted to use this information to weight premiums or make hiring decisions. Indeed, in some jurisdictions legislation specifically designed to offer additional protection to genetic information has been either proposed or put in place. While this might seem sensible, some commentators object to what they call ‘genetic exceptionalism’, arguing that genetic information is not inherently different from other medical information and should not be treated as such.4 Although these are important issues, they will not be further dealt with in this chapter as they raise questions different from those under consideration in this narrative. Second, genetic information is different from other medical data in that it
has consequences for families. Two problems arise from this. First, the decision to seek genetic information may have consequences that go beyond those normally associated with obtaining knowledge about health status. Second, control of the information may be more problematic because of the interests that others may have in sharing it. The challenge for the individual is to manage the knowledge that genetics can provide. The challenge for society is to formulate a principled basis from which to engage appropriately with the ethical and legal issues that arise from genetic science and the information derived from it. For our purposes, the important questions for consideration concern the
use and control of genetic information, as these pose challenges both for the tested individual and the healthcare professional involved. For the individual, the decision as to whether or not to share their genetic information with others may be more complex than, for example, telling relatives that you have high blood pressure. As we will see, even if an individual feels an obligation to inform relatives of their genetic status, it is not always the case that this will be welcomed. On the other hand, Petrila argues that ‘access to such information may prove useful as well, particularly to people who may be at genetic risk for particular diseases.’5 Tensions, then, may arise between competing interests in learning about genetic information. In addition, healthcare professionals may feel themselves to have an obligation to ensure that relatives are informed in some cases, even when the patient protests. It is plausible that the individual who seeks genetic information already
has reason to believe that there may be problems within the family. This, however, does not necessarily mean that they regard whatever they find out as being any less personal or confidential than any other health related
information. However, the mere possession of genetic knowledge places them in a potentially uncomfortable position. Given the familial nature of genetics, it must be asked what moral obligations do we have here? Additionally, what is the proper approach of the professionals who hold this information? Resolving these questions has become increasingly urgent as the volume of genetic information being gathered increases exponentially. Indeed, the knowledge gained from the science of genetics will likely take on increasing importance in direct proportion to the availability of genetic tests and the emergence of links between genes and health. Glasner and Rothman say that:
It has been acknowledged for some time that ‘knowledge’ is the most important global factor in determining standards of living in today’s world, and the new genetics is becoming a major contributor in the twenty-first century … 6
Moreover, the genetics revolution is changing, and will continue to change, people’s attitudes to themselves and their community. Callahan, for example, has argued that medical progress, which obviously will include advances in genetic knowledge, ‘reshapes our notions of what it is to have a life … ’.7 It is in the nature of medical advance to depend on the accumulation and interpretation of information and in the nature of medical encounters that they generate yet further information. It is very much in the interest of societies and individuals that we learn what we can about disease states, their genesis and their treatment. Although the promise of therapies and cures that was held out at the beginning of the genetics era has not yet been fully realised, progress is being made. More and more disease states can now be shown to have a genetic basis, meaning that testing of individuals can reveal information about their susceptibility to particular conditions, and in some cases allow them to take avoiding action; for example by modifying lifestyle. The more we know about the contribution of genes to (ill) health, the more we have come to realise just how many people may be affected. A significant percentage of the population will carry genes which will predispose them to potential health problems, and understanding this may help them to avoid the onset of these conditions. In other cases, where no intervention is possible, knowledge of their genetic status may at least allow them to come to terms with their future.8
