Select Committee on Science and Technology Fourth Report

CHAPTER 7: Ethics, privacy and consent

7.1 In this Chapter we examine questions of ethics, privacy and consent specifically as they may impact on the creation and use of human genetic databases. There may, of course, be many concerns under these headings in the wider application of rapidly advancing knowledge but, as noted in paragraph 2.12, these were outside the scope of our Inquiry. In particular, the public perception of these matters is being studied concurrently by the HGC.

The sensitivity of personal genetic data

7.2 The analysis of genetic data raises particular ethical concerns and issues of privacy and confidentiality that go beyond those raised by the usual collection of health and other data from individuals.

(a)  Genetic information gives the biological essence of each human being - each individual (other than identical twins) is genetically unique.

(b)  This genetic information, acted upon by environmental factors, gives the backdrop to disease susceptibility, perhaps indicating a potentially increased (or decreased) risk of disease many years into the future.

(c)  Moreover, genetic information has implications not only for the individual but also for family members as regards their own susceptibility to disease.

Data and consent


7.3 Sir George Radda (explicitly quoting Baroness O'Neill of Bengarve[51]) defined informed consent as "consent that is sufficiently informed as to be valid" (Q 91). "Consent" was frequently qualified (by words such as "informed", "fully informed", "proper" and "explicit") throughout our written and oral evidence. These seemed to imply differences in level of consent, although we were not able to discern any clear or consistent distinction in their use.

7.4 As noted by Professor Hilary Thomas on behalf of the GMC, consents appropriate for genetic database research - involving the collection of biological material and the secondary analysis of data - were different from those appropriate for medical procedures such as operations or participation in experimental therapies (QQ 253 & 254).

7.5 We too recognise a difference in kind between the consent required for:

(a)  clinical procedures (whether for treatment or research purposes) where there is a risk, however small, to the individual's health and well-being; and

(b)  use of data about an individual where there is no potential for physical harm and, provided that privacy is properly safeguarded, no other possibility of personal detriment.

Informed consent for clinical procedures is beyond our terms of reference and we do not consider it further here.

7.6 Professor Ruth Chadwick of Lancaster University expanded on the separate components of informed consent.

(a)  Information was needed on the nature and purpose of the research; the risks and benefits to participants; what would happen to the results; whether feedback would be given; and who was going to control the information (Q 252). How this information was imparted to the patient was also important (Q 266).

(b)  Consent concerned matters such as whether participation was voluntary and undertaken without undue inducement (Q 252).

7.7 As noted in paragraph 7.2(c), consent for genetic research also has implications for members of the subject's family. Professor Chadwick was of the view that there would be severe difficulties for researchers and medical practitioners if they had to consult family members. She suggested that study participants or patients should be encouraged to discuss the issues within their families - in some cases, they would have a moral duty to do so (QQ 267 & 277-281).


7.8 Like Professor Thomas (Q 253) and other witnesses, we see a distinction between 'primary' and 'secondary' use of data, as defined below.

(a)  Primary use is use of data for the main purpose for which they were originally collected directly from the individuals concerned (e.g. hospital patients or participants in research projects).

(b)  Secondary use is use of existing data for purposes other than those for which they were originally obtained.

7.9 This distinction also applies to data extracted from biological samples, either now or some time in the future. As noted in the MRC's written evidence (p 63) there was the potential for unforeseen experiments on and analyses of retained samples or data - perhaps arising from new discoveries long into the future. An example of this is given in Box 6.

Box 6

Secondary use of data from Guthrie cards

Retained samples may prove useful for analyses unanticipated at the time of collection. The Academy of Medical Sciences (p 1) and the UK Neonatal Screening Laboratories Network (P 94) drew our attention to the neonatal bloodspots ('Guthrie cards' - for the diagnosis of phenylketonuria, by a non-genetic test) which, in some regions, provided a source of DNA from large infant populations. Although not collected for the purpose, these samples could be used for a variety of genetic research projects.

This is a good example of secondary use of data that would be a matter for the Medical Data Panel we propose in paragraph 7.58.

7.10 At our Imperial College seminar (see Appendix 4), Dr Olsen told us that the distinction in Denmark between research involving the primary and secondary use of data was reflected in the consent procedures: the secondary use of data did not require individual consent, although the research had to be approved by a national Data Inspection Agency (see paragraphs 7.35 ff).

7.11 Baroness O'Neill was of the opinion that secondary analysis of data must be permitted to continue as it was a vital part of the public health function (Q 327).

7.12 Our understanding of current UK consent procedures for the primary and secondary use of data is summarised in Box 7. Regardless of the consent position, the holding and use of personal data is, as noted in paragraph 3.11, subject to the provisions of the Data Protection Act.

Box 7

Consent procedures for use of data
Collection and use of personal and medical data for clinical purposes - e.g. by GPs and hospitals. IMPLIED CONSENT
Primary collection and use of personal and medical data for clinical research, clinical trials etc. INFORMED CONSENT
Secondary use of data not only for clinical audit, clinical governance, health service management, disease registries, epidemiological surveillance etc but also for research that was not in mind when the data were originally collected. UNCERTAIN


7.13 Baroness O'Neill stressed that tissue samples and the like for medical research should be provided in a non-commercial framework and highlighted the need for consent forms to acknowledge individuals' generosity in participating in research (Q 322).

7.14 She also thought that, in considering issues of informed consent, there had to be an accommodation of the needs of society because of the potential for public good from participation in medical research. She noted that each of us and our families had benefited from research using data collected on other people when they had been patients or participants in research projects (Q 318).

7.15 Professor Chadwick did not think it feasible to insist on participation in research as a public or moral duty (QQ 273 & 276). She thought that the line between the rights of the individual and the good of society was, to a large extent, a matter for public opinion rather than ethical debate (Q 275) while Baroness O'Neill felt that, although there might be fluctuations in public opinion, the underlying ethical arguments did not change (QQ 330 & 331).


7.16 Sir John Pattison, Dr Dexter, Sir George Radda and others among our witnesses were all of the view that, in the United Kingdom, it was essential that participants in long-term research projects (including the proposed UK Population Biomedical Collection) gave proper consent (QQ 47 & 105) and freely volunteered to take part, with the right to withdraw their consent at any time (Q 92) - in which case data and samples would be destroyed (Q 72). This was in contrast to the situation in Iceland, where an 'opt out' rather than 'opt in' procedure for the use of data from medical records for such research was in place (Q 105).

7.17 Baroness O'Neill (QQ 312 & 331) and Sir George Radda (Q 92) both felt that it was possible for broad consent to be given to future experiments, even though it was not possible to specify them in advance. Professor Chadwick stressed the need to be able to assure confidentiality of the individual records used in such research (Q 259). Dr Roses felt that, in the future, it might be possible to go back to participants for re-consent when radical new research questions arose (Q 229).


7.18 Professor Chadwick felt that there was a danger of over-regulation in this area (Q 260). From the pharmaceutical company perspective, both Dr Roses and Dr Power felt that the regulatory climate on informed consent might impact adversely on the ability of drug companies to carry out their research in the United Kingdom (Q 228).



7.19 Several of our witnesses touched on the key issue of the anonymisation of data. However, there was no consistency in their use of terminology. This is a good example of the 'semantic heterogeneity' mentioned in paragraph 5.18.

7.20 As we noted while taking evidence and summarised in Box 8, three broad levels of anonymisation could be distinguished (Q 265):

(a)  fully identifiable data, where the clinical/genetic record was linked to an identifiable individual;

(b)  de-identified (anonymised) data, where individual identifying information had been replaced by a code (which could be made very secure) allowing data and individual identifiers to be re-linked under certain circumstances; and

(c)  permanently de-linked data, where any link between the data and the individuals from whom they were collected had been completely destroyed.

Box 8

Degrees of anonymisation
Is there a link between subject identity and genetic data? Who has access to the identifying information? Can researchers using the data identify individuals? Can individuals' data be removed from the database?
Fully identifiable
All data users
De-identified (anonymised)
Trusted third party

7.21 In a helpful note on anonymisation matters, the Parliamentary Office of Science and Technology (POST) proposed a sub-division of de-identified data to highlight the option of a data holder's keeping back identifying information and passing only completely de-linked data to the researcher. (P 91).

7.22 As part of their written evidence, GlaxoSmithKline provided a copy of the Pharmacogenetics Working Group proposed terminology for categories of anonymisation of DNA samples and data. This recognised five categories rather than the three noted above (P 58).

7.23 In relation to de-identified data, Dr Power, Dr Cheeseman and Dr Roses told us that the code linking back to the individual might be held by a trusted third party - for example, the treating physician in a clinical trial (QQ 229-237) or perhaps, in future, an intermediary such as a biotechnology company (Q 240).


7.24 A number of witnesses told us that the degree of anonymisation of the data was important in determining the type of consent that might be necessary. Professor Thomas drew a distinction between consent required for identifiable patient data and that for de-identified or de-linked data, even if it were possible (with appropriate security codes) to re-establish the link back to the individual (QQ 262-265).

7.25 For much fundamental genetics/genomics research (such as comparisons with other species, sequence/protein identification, cellular function) permanently de-linked data were likely to be sufficient[52].

7.26 As noted by the MRC in written evidence, there had to be some means of linking data back to the individual in many kinds of research on human genetic databases - the whole point was to link subsequent disease/phenotypic data with genetic and lifestyle information (p 63). Dr Cheeseman told us that, for audit purposes[53], clinical trials data needed to be traceable back to the individual (Q 237).

7.27 Professor Thomas thought it preferable to work with de-identified (rather than identifiable) data wherever possible, preferably such that no individual should be able to break the code (Q 264). Baroness O'Neill stressed the need to maintain confidentiality, possibly at the expense of the level of aggregation of the data that was desirable for research purposes (Q 319).

7.28 The MRC guidelines[54] stressed that any researcher with access to identifiable data had a duty of confidence to research participants (p 63).

GMC guidelines

7.29 Professor Forman, at our Imperial College seminar (see Appendix 4), felt that invaluable secondary research through disease registries was threatened by recent GMC guidelines to doctors[55]. These stated that data should be passed to registries only with individual informed consent or in anonymised form, other than in exceptional circumstances. As noted in paragraph 6.21, he warned that the whole cancer registry system would collapse if the requirement for informed consent and/or anonymisation prior to registration were to be enforced. Sir George Radda and Dr Dexter expressed the view that the cancer registries were absolutely vital to research and medical care in providing basic information on the health of the nation (QQ 101 & 104).

7.30 Baroness O'Neill saw no ethical difficulty in using cancer registry data for research where specific permissions had not been obtained. She regarded the use of such data as part of the obligation of any society to assist medical advance for future generations, repaying the debt to earlier generations for the medical benefits they in turn had assisted (Q 318). She specifically stated that, provided that privacy concerns were met, there should be no individual right to exclude data about one's case from the national statistics (Q 329) since, as noted in paragraph 7.11, it would be impossible to carry out the public health function without such data (Q 327).

7.31 During her evidence, Professor Thomas indicated that the GMC guidelines on cancer registries had been misinterpreted:

"Our guidance on the cancer registries was not intended to mean that patients had to have a short talk or a long explanation as to the implications of using that data or having that data used by the cancer registries: it was simply that we felt patients had a right to know the information was being used. We did not expect doctors to have to have signed consent forms and long explanatory notes." (Q 261)

7.32 Professor Thomas also noted that doctors had leeway to interpret the guidelines as they saw fit in particular circumstances (QQ 283 & 294). She also felt that there could be situations where a patient's refusal to participate might be overruled either in the interests of the patient or in the wider public interest (Q 269). That would particularly be the case if the patient's data were completely anonymised (QQ 270 & 271).

7.33 As noted in paragraph 6.21, Clause 67 of the Health and Social Care Bill (as introduced to the House of Lords[56]) proposed special provision for disease registers to function without the need for specific consent from the patient.

Ethical considerations

7.34 As Dr Paul Martin pointed out in his written evidence, robust systems with strong oversight mechanisms were needed to ensure that research on human genetic databases was carried out to the highest ethical standards, in both private and public sectors. He saw it as essential that the systems enjoyed the support and confidence of the public, so that the undoubted benefits of this research could be realised (p 113).


7.35 Dr Olsen told us at our Imperial College seminar (see Appendix 4) that Denmark's National Data Inspection Agency acted as a 'trusted third party' overseeing research on secondary data such as cancer registry data. This did not require informed consent from the patient. A separate scientific ethical committee system was responsible for overseeing biomedical research that involved primary collection of data, where individual consent was required.

7.36 Baroness O'Neill felt that it would be impossible - and unduly burdensome for both parties even to try - to seek consent at the time that the original samples were taken to cover all future eventualities (Q 314). She took the view that, provided the research was done for an "ethically serious" purpose (Q 313), obtaining future consent by a process along the lines of the Danish model would be appropriate (Q 315) - although people should be able to opt out (at the time that the original consent was given) of particular areas or lines of research (Q 316).

7.37 Professor Chadwick also thought that the idea of a trusted third party to oversee research on retained specimens was very promising (Q 268) and she was highly supportive of the Danish system (Q 304). Although Professor Thomas felt that the GMC would consider that the individual's views had primacy, she also felt that the trusted third party would be an acceptable model in some circumstances (Q 268).

7.38 As to the composition of the overseeing committee for such a body, Baroness O'Neill thought that there should be representation of medical, scientific and patient groups (Q 317) and Professor Chadwick thought that ethicists and lawyers should also be represented (Q 306).

7.39 With regard to the proposed MRC and Wellcome Trust UK Biomedical Population Collection (see paragraph 4.16 ff), Dr Dexter and Sir George Radda outlined arrangements - similar to the Danish model - for an independent body to oversee the research (QQ 72, 88 & 104). This would have lay and public representation to oversee:

(a)  custodianship of the DNA samples;

(b)  management of the collection;

(c)  application of ethical codes;

(d)  the principles guiding priority setting;

(e)  the quality of information available to participants; and

(f)  the handling of complaints.

Members of this overseeing body would be recruited through public advertisement (p 63).


7.40 Supplementary evidence from the Department of Health usefully outlined the role of regional and local ethical committees and the balance of responsibilities between them (P 90). In 1991, the Department of Health published guidance which formally required all health authorities in England to establish one or more Local Research Ethics Committees (LRECs) to provide advice on the ethics of proposed research. They had to include lay members.

7.41 By the mid 1990s, over 200 LRECs were in operation, and it was clear that the requirement to obtain separate ethical approval at each research site for a multi-centre research project was causing real difficulties. Accordingly, a series of Multi-centre Research Ethics Committees (MRECs), eight in England and one each in Scotland and Wales was established. The opinion of any one MREC applied in the whole of the United Kingdom, but there were still difficulties at the boundary with LRECs which retained a role in local issues: some LRECs continued to require changes to the research protocol itself, beyond their formal remit.

7.42 Partly as a result of these difficulties and in response to changes required by the impending European Directive on Multi-centre Trials, a Central Office for Research Ethics Committees (COREC) was established in the summer of 2000, with a director accountable to the Department of Health's Director of Research and Development, Sir John Pattison. COREC was not an ethics committee and did not undertake ethical review, but advised on policy and the changes necessary in the overall Research Ethics Committee system, with a view to issuing new operational guidelines, and devising common operating procedures (see also QQ 41 & 82).

7.43 For multi-centre epidemiological studies proposed since November 2000, there was no longer a requirement to go to each LREC once approval from an MREC had been obtained. A similarly streamlined ethics approval system might be invoked for research proposals involving human genetic databases (P 90).


7.44 In late 1996, the Department of Health established a Security and Confidentiality Advisory Group (the Bellingham Committee) to advise on the security and confidentiality of data passing through or held by the NHS-wide Clearing Service and data held on the NHS Strategic Tracing Service[57]. The Committee (which included a lay member of the General Medical Council, as well as professional, Health Trust and Health Authority representatives) had a particular role in overseeing the use of national Hospital Episode Statistics data.


7.45 We heard from Dr Bob Bramley, FSS Chief Scientist, that the Service not only supplied DNA profiles to the National DNA Database, but was also custodian of its use (QQ 152-154 & 164). Dr Bramley was confident that there was no conflict of interest: there were effective 'Chinese walls' between the two functions (QQ 176-177). There was no lay supervisory body to monitor and protect the public interest (Q 177).


7.46 Arrangements for the handling and analysis of personal data held in human genetic databases should be carried out to the highest ethical standards, with proper attention to the rights of the individual to privacy and confidentiality of their personal medical and other data. It is essential that there is high public confidence in this activity, otherwise some or many of the benefits to be gained from the advances in genetics will not be realised.

7.47 In this complex and sensitive area of work, there is a spectrum of needs ranging from those of individuals - who have the right to privacy and confidentiality of their data - and those of society, where the analysis of medical data collected through the health service is an essential component of clinical audit and governance, epidemiological monitoring of the health of the population, and health service management. All citizens (and future generations) benefit from this activity.

7.48 We believe that it can generally be presumed that individuals are content for data about them to be used for the common good provided that their personal privacy is protected. As noted in paragraph 3.11, the Data Protection Act does not distinguish between genetic data and any other data about individuals - nor, as we indicate in paragraph 3.17, do we believe this to be necessary. We note, however, that many people may regard their genetic information as being particularly sensitive.

7.49 It is important that any regulatory framework should recognise that different forms of consent may be needed for different medical purposes. The explanation and consent associated with the use of information for research should be different from those required for a patient who is about to undergo a clinical procedure.


7.50 There are several ways in which the Data Protection Act 1998 could seriously inhibit legitimate medical research. For example, because it is impossible to foresee the full extent of future uses of genetic and other data, the requirement

"that personal data shall be obtained only for one or more specified and lawful purposes, and shall not be further processed in any manner incompatible with that purpose or those purposes"[58]

might, in some circumstances, not be satisfied. In addition, it is important that the Act's requirement for data to be kept up to date[59] does not result in the deletion of medical histories and associated data.

7.51 As noted in paragraphs 7.8 and 7.9, we distinguish between primary use of data (collected for a specific purpose directly either from patients or participants in research projects) and secondary use of data (use of existing data for purposes other than those for which they were originally obtained). For these purposes, 'data' includes data extracted from biological samples. The primary collection and use of data will always require individual consents - unless there is a statutory requirement as, for example, in forensic applications.

7.52 Different considerations apply to the secondary use of data:

(a)  because of the passage of time, it may be impossible or impracticable to obtain individual consent; and

(b)  more significantly, in the interests of the public good, it will be essential in some circumstances to achieve as near as possible full coverage of the population.

This is not to say that data may be used freely for secondary purposes. As noted in paragraph 3.11, such data are covered by the provisions of the Data Protection Act (although not after the individual's death). With reference to our definitions in Box 8 (on page 35), the Act covers 'fully identifiable' and 'de-identified' data - but not those which have been 'permanently de-linked'.

7.53 There is, as we noted in paragraph 7.42, already a network of local and regional research ethics committees, overseen (in terms of policy and operation) by a national body, COREC. These are concerned mainly with projects involving the primary collection and use of data but also deal with projects involving the secondary use of data. Furthermore, we noted also that the Bellingham Committee oversees security and confidentiality of the use of certain NHS data for secondary analyses.

7.54 The fact that this complicated structure seeks to deal with both primary and secondary uses of data means that, as we noted in Box 7 on page 34, the consent arrangements for secondary use of data are currently uncertain. This uncertainty has not been helped by the new GMC guidelines which, as noted in paragraph 7.29, are seriously jeopardising the availability of data for secondary use.

7.55 Against that background, we see the need for action on two fronts. The first need is for clarity in the operation of the GMC guidelines. As we were finalising this Report, matters of patient data confidentiality were before the House of Lords as part of the Health and Social Care Bill. The problem of reduced flow of essential data to disease registries that it was seeking to address[60] would, in our view, be largely resolved if the GMC guidelines were to be interpreted along the lines indicated by the GMC in oral evidence to us (see paragraph 7.31). As a matter of urgency, we recommend that the GMC should make it clear that, as their representative told us in evidence, doctors are not required to obtain signed consent before data are passed to disease registries. Instead, patients need simply to know that data about them may be used in this way. Such clarification may require a rewording of the GMC guidelines to put their position beyond doubt.

7.56 We further recommend that the HGC and the Government should promulgate guidance for all those who collect or hold genetic data about identifiable individuals, reminding them of their obligations under the Data Protection Act 1998 and stressing the need to record, alongside the data or in an appropriately accessible form, whether or not the individuals concerned had been informed of the use to which their data might be put and whether they had expressed any reservations.

7.57 The second need is for clarity over the handling of permissions for secondary use of data. In this connection, we were impressed by the Danish approach where a clear legal distinction is made between the primary and secondary use of data. Research using only secondary data is channelled through an overseeing body which acts as a 'trusted third party' to evaluate the merits of the proposed research and to protect the rights and interests of the individuals concerned.

7.58 We see a need for a body in the United Kingdom, similar to the Danish model, to represent people's interests in the approval process for the secondary use of data and, where satisfied, give consent on their behalf. Accordingly, we recommend that the Government establish a Medical Data Panel to provide a single, clear process for approving projects involving the secondary use of NHS and medical research data (including data derived from retained biological specimens). Its functions would be three-fold:

(a)  to consider for approval projects involving national or supra-regional secondary use of health and related data;

(b)  to set policy for approval of projects involving secondary use of such data at regional and local levels; and

(c)  to advise the Government and the Data Protection Commissioner on the interpretation of the Data Protection Act in its application to medical data - and, if necessary in the light of medical advances, changing public attitudes or other changing circumstances, to advise on possible amendments to the legislative framework.

This independent body should have wide representation, including both lay and professional members.

7.59 We recommend that endorsement by this body, or by others within its policies, of a proposed use of data should constitute a sufficient protection under the terms of the Data Protection Act. The process should also afford additional protection for people's data (and any genetic implications for their relatives) after their death.

7.60 As noted above, the current Research Ethics Committee framework already has some responsibility for approving projects involving the secondary use of data, although this is not its main concern. We recommend that the Government amend the remit of the Research Ethics Committees to require them, as far as projects involving secondary use of health and related data at regional or sub-regional level are concerned, to operate within the policies set by the new Medical Data Panel.

7.61 As noted in paragraph 7.39, the MRC and The Wellcome Trust aimed to establish an independent body to oversee their proposed cohort study of 500,000 individuals. We recommend that the Government should, in the light of our recommendation for a Medical Data Panel[61], consult the MRC and The Wellcome Trust about the committee which the latter have proposed for the UK Biomedical Population Collection.

7.62 We referred in paragraph 7.55 to Clause 67 of the Health and Social Care Bill as far as this sought to deal with the flow of data to disease registries. Looking more widely, we emphasise that it is very important for the health of the nation that, subject to suitable safeguards, individual health data should be available for serious research whether based in hospitals, universities, research institutes or industry. Where questions of public interest arise we commend the concept of independent decision-making as offered by our proposed Medical Data Panel, rather than laying this onus on the Secretary of State as proposed in the Bill. In any case, it is vital that there should be a single and straightforward process for securing agreement for the secondary use of data so that important research is not strangled by bureaucracy.


7.63 For research involving human genetic databases, complete de-linkage between personal identifying information and medical, genetic and other data is not possible, since it is vital to be able to follow up that person over time. Nonetheless, robust procedures need to be in place to ensure that personal identifying information is held securely in order to protect confidentiality.

7.64 Subject to proper safeguards on data privacy and security, data may be held in potentially identifiable form. When they are distributed and used, however, this should be at the highest level of anonymisation possible consistent with the aims of the research. It follows that data could be made available to different people with different degrees of anonymisation. In any event, individuals must not be identifiable in the results of published research, unless they have given specific consent.

7.65 We note that current consent forms for medical research are often defensive in nature. Instead, they should draw attention to the potential benefits to the individual and, more generally, to society as a whole. We recommend that the procedure to be followed by all those involved in seeking consent for participation in research involving the collection and retention of biological samples that could be used for genetic analysis should include the following elements:

(a)  pointing out that

(i)  the medical treatment that all receive is based on studies carried out on very many earlier patients and that the request is for them to provide similar help for future generations;

(ii)  because medical science is changing very rapidly, some of the valuable uses to which the data could sooner or later be put are not foreseeable;

(b)  seeking the individuals' agreement

(i)  to participate in the study;

(ii)  to entrust oversight of secondary use of their data to the arrangements in place under the proposed Medical Data Panel;

(c)  asking whether participants would wish to be informed of any element in their genetic make-up that might be a cause for concern based on current knowledge - or to be alerted in the future in the light of new discoveries;

(d)  explaining the arrangements for withdrawing the consent; and

(e)  thanking participants for their help.


7.66 The FSS acts as both user and custodian of the National DNA Database and, notwithstanding the safeguards that have been put in place, there is clear potential for conflicts of interests. We recommend that the Government should establish an independent body, including lay membership, to oversee the workings of the National DNA Database, to put beyond doubt that individuals' data are being properly used and protected.

51   A member of the former Human Genetics Advisory Commission, who was also one of our witnesses. Back

52   Birney E, Bateman A, Clamp ME, Hubbard TJ. "Mining the draft of the human genome." Nature 2001;409: 827-828; Rubin GM. "Comparing species." Nature 2001;409: 820-821; Tupler R, Perini G, Green MR. "Expressing the human genome." Nature 2001; 409: 832-833. Back

53   In this case, to ensure that the trials had been conducted in accordance with the agreed protocols. Back

54   Human tissue and biological samples for use in research. Interim operational and ethical guidelines issued by the Medical Research Council. London: MRC, 1999.  Back

55   Confidentiality: protecting and providing information. General Medical Council, 2000. Back

56   Clause 59 in the Bill as originally introduced to Parliament. Back

57   Information supplied in correspondence from the Department of Health. Back

58   Evidence from the Office of the Data Protection Commissioner, p 70. Back

59   See the fourth principle in Box 4 on page 19. Back

60   See paragraph 7.62 for a comment on other information flows under the Bill. Back

61   See paragraph 7.58. Back

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