The Guidelines implement changes in 2006 to the main national privacy statute. They specify requirements that must be met by private sector health practitioners who choose to use or disclose genetic information without patient consent under National Privacy Principle [NPP] 2.1(ea). Disclosure of genetic information without consent must be in accord with NPP 2.1(ea) and the Guidelines.
The NHMRC notes that, in contrast to other guidelines for clinical settings developed by the NHMRC, the Guidelines have been issued with the approval of the Privacy Commissioner (under section 95AA of the Privacy Act) as the means of implementing the amendment to the legislation.
In summary the Guidelines are as follows -
1 Use or disclosure of genetic information without consent may proceed only when the authorising medical practitioner has a reasonable belief that this is necessary to lessen or prevent a serious threat to the life, health or safety of a genetic relative.Nothing to hide, nothing to fear? Balancing individual rights and the public interest in the governance and use of the National DNA Database, s report by the UK Human Genetics Commission last month, comments
2 Specific ethical considerations must be taken into account when making a decision about whether or not to use or disclose genetic information without consent.
3 Reasonable steps must be taken to obtain the consent of the patient or his or her authorised representative to use or disclose genetic information.
4 The authorising medical practitioner should have a significant role in the care of the patient and sufficient knowledge of the patient’s condition and its genetic basis to take responsibility for decision-making about use or disclosure.
5 Prior to any decision concerning use or disclosure, the authorising medical practitioner must discuss the case with other health practitioners with appropriate expertise to assess fully the specific situation.
6 Where practicable, the identity of the patient should not be apparent or readily ascertainable in the course of inter-professional communication.
7 Disclosure to genetic relatives should be limited to genetic information that is necessary for communicating the increased risk and should avoid identifying the patient or conveying that there was no consent for the disclosure.
8 Disclosure of genetic information without consent should generally be limited to relatives no further removed than third-degree relatives.
9 All stages of the process must be fully documented, including how the decision to use or disclose without consent was made.
The National DNA Database (NDNAD) was established in 1995 and now contains the DNA profiles of approximately five million UK citizens. There has been little concerted public opposition to the rapid growth of the database in the UK, although it cannot be inferred from this that all aspects of the database command widespread support. Through public engagement activities such as the 2008 Human Genetics Commission (HGC) Citizens’ Inquiry and subsequent public consultation, we are aware of the existence of significant concerns that have never been fully addressed. These concerns are the starting point for our deliberations.
We consider the development of the database as the coming together of distinct developments in genetics science, police record-keeping and information technology (chapter one). We discuss the particular technologies in use and make the distinction between a biological sample and a DNA profile. We identify the danger that reliance on the use of the database as an investigation strategy could lead to irreversible evolutions in policing practice that make commitment to the database a fait accompli.
We consider the development of the legislative conditions for the database, principally by successive amendments to the Police and Criminal Evidence Act 1984 (chapter two). We find that the purpose of the database has altered over time and has never been stated in sufficiently clear terms. We discuss the case of S and Marper v. The United Kingdom and identify two limit cases (a database comprising profiles of only convicted offenders and a whole-population genetic database). We describe the problem of justifying any middle path (i.e. holding profiles of some, but not all, people who have not been convicted) as a challenge to the legal ‘presumption of innocence’ on the one hand or, if this can be overcome, to the evidence that would distinguish individuals on the basis of the risk they pose to society. In order to provide clarity and control of the purpose of the database we recommend that the National DNA Database should be established in law through new primary legislation. The permitted uses of the records constituting the National DNA Database should be simply, unambiguously and explicitly defined in legislation, and any use of the database that falls outside those permitted uses should be made an offence subject to strict penalties. Any provision made for amending those uses through delegated legislation should be limited in scope in the primary legislation.
We examine expressed attitudes to DNA and genetic information (chapter three) in order to understand why people might feel that holding DNA profiles on a forensic DNA database is a particular interference with their privacy. We consider four ways in which genetic information might be seen as exceptional compared with other sorts of information. We examine the argument that those who have nothing to hide have nothing to fear from the NDNAD and examine possible harms including the risk of adventitious matches, inadvertent discovery of unknown biological relationships, and breaches of data security. The claim that those whose profiles are retained are in a distinct relationship with the state amounting to ‘genetic probation’ is discussed. We recommend that the legislation that establishes the National DNA Database should be accompanied by a full privacy impact assessment with advice from the Information Commissioner, so that these impacts can be considered when the legislation is debated openly in Parliament.
We examine the social consequences of the NDNAD, in particular its disproportionate effect on certain sections of the population including young people, black and minority ethnic groups, and people with mental health problems. We recommend that new guidance is given on when it is appropriate to take a DNA sample following arrest and to record a resulting DNA profile on the National DNA Database; the guidance should have regard to the circumstances of the arrest (including the nature of the offence of which the arrestee is suspected). Furthermore, we recommend that an independent panel reviews, at regular intervals, evidence relating to arrests and the taking of DNA samples, in order to ensure that (1) the guidance is sufficiently robust and (2) the guidance is being appropriately followed. In order to ensure that the risk of stigmatising particular groups is minimised and attention is given to disproportionate impacts we recommend that the legislation that establishes the National DNA Database should be accompanied by a full equality impact assessment so that these impacts can be considered when the legislation is debated openly in Parliament. In order to express solidarity and to foster greater trust and co-operation between the police and the communities they serve we recommend that all serving police officers, and those whose professional duties require or permit them to come into contact with crime scenes or crime-scene samples, should have their DNA profiles recorded on the Police Elimination Database and retained; this requirement should be a condition of employment. We consider the position of those who ‘volunteer’ to provide profiles for inclusion on the NDNAD and agree with other commentators that consent should be freely given and capable of being withdrawn. We recommend that the statutory framework for the National DNA Database should include provisions relating to consent which, as a minimum, should make it unlawful for records derived from volunteer samples to be retained in the absence of a validly obtained and subsisting consent.
We consider the suggestion that a whole-population database would provide a solution to the disproportionate representation of certain groups under the current arrangements but remain convinced that the need to avoid discriminatory consequences is not in itself a sufficient reason to institute a whole-population database.
Having concluded that the balance of argument is against the general threat of crime as a justification for retaining DNA profiles from unconvicted people in general, we discuss how the usefulness of the database as a tool to identify offenders might provide a justification for retaining profiles from those most likely to offend (chapter four). Two problems with this approach are discussed: (1) how those at risk of future offending can be so reliably identified as to licence a prospective interference with their privacy and (2) defining and evaluating the ‘forensic utility’ of the database as an investigative strategy. We suggest how a definition of ‘forensic utility’ should be approached and the measures that are needed to ensure it is properly evaluated. We recommend that the National DNA Database Strategy Board should define and consult widely on an appropriate definition and acceptable measures of forensic utility. These should support the evaluation of the role played by the National DNA Database in the identification of offenders, while making it feasible to collect prospectively the evidence necessary for the evaluation in an operational context. Given the gravity of the consequences of basing decisions about the scope of the database and the retention of individual profiles on their utility in crime management, public and independent scrutiny are necessary. We support the efforts that are currently being made by the National DNA Database Strategy Board to identify and provide meaningful information that can be placed into the public domain, and we recommend that data supporting evaluation of the forensic utility of the National DNA Database should be collected and published by the National DNA Database Strategy Board or the National Policing Improvement Agency National DNA Database Delivery Unit. An evaluation of such data should be conducted by an independent body and placed in the public domain.
We consider arguments for the retention of biological samples after a DNA profile has been extracted from them. We do not find any of these convincing and, in any case, they are far outweighed by the concerns already identified about the further uses to which they may be put. Therefore we recommend that there should be a move towards the destruction of subject samples when profiles have been loaded to the National DNA Database; and that the UK should continue to support efforts to standardise sets of markers with other countries in Europe and elsewhere with whom the sharing of data for criminal intelligence purposes may be desirable.
We turn to the future (chapter five) and consider ways in which the utility of the database might be increased: by increasing the size or improving its composition, by the introduction of new technologies for analysing samples and protecting individual privacy, and by introducing enhanced approaches to data mining. We identify the potential for both beneficial and harmful ‘function creep’ and for ‘function leap’ that would involve co-opting the NDNAD to an ulterior and more urgent purpose. We consider briefly changes in social conditions that might make this either more likely or more tolerable. We consider sharing and linking data both with other databases and with forensic databases in other jurisdictions, and we recommend that robust processes should be developed to control international data sharing and that these should be subject to appropriate monitoring in order to ensure that (and to determine whether) the necessary data, and no more, is being shared or exchanged. We reiterate our view (chapter six) that holding the DNA records of innocent people fundamentally alters how suspicion, guilt and innocence function in the relationship between the citizen, society and the state.
We recommend that the Government supports continuing national debate, informed by the publication of relevant evidence, that addresses explicitly the extent of and justification for the interference with personal privacy inherent in retaining personal DNA profiles. The debate should address the basis on which a distinction may be made among unconvicted individuals so that the collection and retention of DNA profiles of some of them, but not all, would be acceptable. Whatever measures are put in place in the interim to comply with the S and Marper judgment we recommend the establishment of a Royal Commission on the National DNA Database to give focus to, and to learn from, the public debate, and to ensure that its outcomes will be taken forward and reflected in future framework legislation. We confirm the conclusions of our Citizens’ Inquiry that there is a need for better understanding of the role of DNA in police investigations, to foster increased trust and co-operation between the public and the police. We recommend that more, and more reliable, information about the National DNA Database is made widely available, in particular evidence of its usefulness in investigating crime and leading to the conviction of offenders. To represent the different perspectives that people have and the values that people bring to bear when discussing the NDNAD we identify six ‘ideal types’ that we have abstracted from our various public engagement activities. Having distinguished these types we identify the principles that they share in common and the key point of divergence – the challenge the NDNAD represents to the presumption of innocence.
Finally, we set out some practical measures to improve the governance of the database. While we appreciate the efforts made to increase openness by the NDNAD Strategy Board, nevertheless we recommend that an independent body be established to oversee the management and use of the National DNA Database, and that this body should conduct its business in an open and transparent way to the fullest extent that the operational sensitivities of policing will allow. In order to ensure that proper consideration is given to requests to remove DNA profiles from the database we recommend that clear and explicit rules for the removal of samples/profiles from the database be drawn up so that consideration and, if necessary, argument can be addressed to whether a given case falls under that rule. Consistently with our other recommendations concerning the establishment of the database in law, we recommend that these rules should be stated in primary legislation. To ensure that these rules are properly implemented and to reduce the barriers (of difficulty and cost) currently faced in securing removal of DNA profiles from the NDNAD we recommend that an independent body be empowered to consider appeals against rejection by a Chief Officer of an application to remove a DNA profile from the National DNA Database.
A key finding in relation to the evidence surrounding the NDNAD is that there is currently insufficient evidence available to demonstrate its forensic utility, certainly to the extent that its proven usefulness might justify greater intrusions into individual privacy. We are particularly concerned that no deliberate and appropriate efforts appear to have been made to redress thisprospectively. Therefore we recommend that the National DNA Database should have in-built reporting systems properly designed with the assistance of those with appropriate academic expertise to provide information necessary to demonstrate forensic utility and for equality and privacy impact assessments. In order to ensure that the evidence is brought to bear on NDNAD profile retention policy as it emerges we further recommend that an annual review be undertaken, informed by the reporting systems we have recommended, of the forensic utility of the National DNA Database and that the review should draw out strategic and policy proposals for the management and use of the database.
Finally, given the enormous significance of the ethical issues raised by the database, and particularly its role in approving research using the database, we recommend that the National DNA Database Ethics Group be placed on a firmer footing: members should be remunerated (as for the majority of other public bodies), and the secretariat strengthened to support its work. Its independence from the Home Office should also be increased, as should its capacity to review and authorise research applications.
