Involving Communities: A Matter of Trust and Communication

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Crossing Over

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Crossing over : genomics in the public arena / edited by Edna Einsiedel & Frank Timmermans. Includes bibliographical references and index.

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5 Involving Communities:

A Matter of Trust &Communication

1

Béatrice Godard

1 INTRODUCTION: THE CARTAGENE PROJECT

THE CARTAGENE PROJECT AIMS to map genetic variation in a large sample of the adult

population of Quebec. The CARTaGENE resource will allow large-scale medical, pharmacogenomics and public health studies – including association studies of common diseases or ‘protective’ phenotypes – and is expected to lead to the discovery of new susceptibility genes. The demographic component of the project will determine mutation frequencies in the different regions of the province, and, thus, guide the establishment of medical genetic services tailored to the needs of the regional sub-populations. In more general terms, the goal of the research is to provide information required for an optimal use of genetic knowledge and technology in the health care system.

The investigators of the CARTaGENE project propose the following:

1 Random selection of 50,000 adults between twenty-five and seventy-four years of age, representing 1% of the population in each of the respective age groups. The recruitment will be unbiased as far as disease and ethnic origin are concerned, and will be representative, not only with regard to the diversity of the population, but also with respect to its density. The population of Quebec is homogeneous in certain aspects, but heterogeneous in others. Approximately 55% of the population lives in southwest Quebec, in the vicinity of Montreal, which is, with its nineteen languages, more heterogeneous than the rest of the Quebec population, which is composed mainly of French Canadian descendants.

2 Anonymization of personal, medical and sociological data of consenting participants, as well as of biological samples obtained at the time of interview.

3 Provision of comprehensive knowledge of genetic variation in a large population. 4 Contributing to the development of tools and strategies for detailed phenotyping. 5 The organization of public consultation and the encouragement of citizen engagement.

CARTaGENE will be in the public domain and accessible to researchers, be they national or international, and public or private. It will operate in a standardized public health network. For the benefit of the participating population, a public authority, the Institut de Populations et de Génétique (IPEG), has been created as the steward of CARTaGENE.² Already in 200, CARTaGENE had an information session with representatives of Quebec’s Access to Information Commission (Commission d’accès à l’information du Québec, or CAIQ) in order to explain the framework in which the investigators would present their request to obtain permission for access to the Quebec’s Health Insurance Authority (Régie d’assurance maladie du Québec, or RAMQ) list of enrolees and medical data. The members of the CAIQ did not foresee insurmountable difficulties in eventually granting such an agreement. Discussions are still ongoing with representatives from the Ministry of Health and Social Services of Quebec, who

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are endorsing the project.

As soon as funding has been acquired, a demonstration phase will be conducted. The ultimate goal of this preparatory phase is to obtain the approval of the CAIQ with regards to () the security of personal data, (2) procedures pertaining to privacy and anonymization, as well as (3) authorization to the RAMQ to provide nominative data (such as people’s address information, for example) for recruitment. The preparatory phase also includes fine-tuning of the public consultation protocol, as well as the completion of the IPEG incorporation. Ethical evaluation and acceptance of the project will also be sought. Once this preparatory phase is finished and funding is available for the finalized and publicly accepted CARTaGENE project, the recruitment of the participants will start, which will be spread over four years.

2 THE COMMUNICATION STRATEGY OF CARTAGENE

The communication strategy of CARTaGENE has two components: communication with the public and with participants, as well as communication of the results of the research to the scientific community.

2.1 Communication with the Public and with Participants

The communication with participants and the public consists of two parts: (1) a communication plan to inform and involve both citizens and participants prior to and during the research project, and (2) public consultation – via citizens’ forums – to promote exchanges between researchers and citizens, and to ensure that the latter’s opinions and views are taken into account. These two approaches will be based on qualitative and quantitative research on social perceptions of

the CARTaGENE project.

2.1.1 Social Perceptions Research

The recruitment of fifty thousand individuals for CARTaGENE will require in-depth knowledge of the social perceptions of the project and its approach. Some of the issues we want to address, for example, include the following: what are the risks perceived by lay people? Are there differences in perception among geographic areas or among cultural communities? Furthermore, what are the major challenges of recruitment? In order to develop a coherent strategy – especially given the presence of a variety of ethical and social concerns in Quebec’s pluralistic society – it is essential that social perception research be carried out, and that relevant and effective approaches be developed (cf. Cragg Ross Dawson 2000; Weijer and Emanuel 2000; Human Genetics Commission 2001; People, Science and Policy 2002).

This research will allow us to expand on our findings about public perception with regard to genomics, by analyzing them in the context of the broader ethical and social issues of which they are part. In each region, activities in support of the social perceptions research will precede the actual recruitment by six months; this will serve as a foundation for the planned subsequent development of the sociological research, as well as for the logistic coordination of the

project in that region.

An initial qualitative phase will involve twenty-seven focus groups of six to eight participants each. They will be distributed throughout Quebec, according to qualitative criteria with respect to the linguistic, the cultural, and the regional diversity in the population. In order to ensure that the sample is representative, participants will be chosen randomly. The use of the focus group technique will allow us to identify the social, scientific and ethical issues as observed in the population (Graves et al. 1998). Subsequently, a report featuring the analysis of the

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tape-recorded results will allow us to gain a deeper understanding of the socio-ethical implications of the social representations aspect of the project.

In order to explore the expectations of the population with respect to the

CARTaGENE project, in November 2001 four preliminary focus groups, each with different socio-demographic characteristics (i.e., either young [age twenty to thirty-five] or old [age thirty-six to sixty-thirty-five], and either a low or a high level of education), have been conducted in Montreal. Overall, the focus group participants were of the opinion that scientific research is desirable. Projects such as CARTaGENE are seen to hold promise for society. Importantly, however, reported across all groups are concerns regarding confidentiality, respect for the individual, transparency, and the right to feedback for the donors. These concerns will now be addressed in more detail.

Confidentiality and Respect for the Individual. It appears that, in general, individuals favour the idea of donation for the ‘greater good,’ but they want to be assured that they will benefit from this donation, and that their personal information will be respected. Not surprisingly, there is a considerable degree of concern about the ways employers and insurance companies might use human genetic information. Many fear that, if others have access to their genetic information, they will know too much about them. Indeed, genetics can be a very useful diagnostic tool, but in most cases the diagnosis of disease, disability, or condition depends on probabilities. It is not clear how accurate genetic data will be as indicators of an individual’s health or disease. Irrespective of the probabilistic nature of such genetic information, the public will need assurances that any results of research that makes use of genetic database information will be handled in a responsible way, and that the public’s best interests will be taken to heart. Furthermore, the public should be made aware of the fact that the very purpose of these studies, at least initially, is to combine genetic information with genealogical, demographic, environmental and medical data.

Transparency. Concerns about transparency were raised, especially concerning the issue of informed consent. It is important to explain to the public why the sample collection is being set up and how the samples will be used. Furthermore, it is important to seek explicit consent for access to an individual’s medical records. In keeping with the principle of transparency, it will be necessary to make clear to donors that their samples could be used in ways that currently

cannot be foreseen.

The Right to Feedback. The donors’ right to feedback is another universal concern. They need to know what sort of feedback they will get on what sort of diseases, if any at all. Many members of the focus groups view feedback as an important potential motivator for participation. They have expectations that the results of research or tests will provide them with a cornucopia of personal information.

Public Ownership. Some members of the focus groups raised the issue of the ownership of medical and genetic databases. There was a concern that exclusivity of research resources would have negative implications, such as restriction of the access to data and the commercialization of the results of the research. Consistent with this concern, we found an extensive degree of support for the notion of public ownership of these databases.

A subsequent, quantitative phase will lead to an internal validation of the questionnaire administered to the participants of the focus groups. The questionnaire will be modeled after the views and concerns expressed by the focus group participants. A telephone survey will be conducted in all eighteen regions (2100 questionnaires) to validate the results obtained through the twenty-seven focus groups. The results of this second phase will be compared to the results of the qualitative phase, hence allowing an assessment of the qualitative results in light of the quantitative ones. In turn, this will help assess (1) how perceptions are distributed, (2) the explanations as gleaned from focus group findings for positions

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identified in the surveys; and (3) what effect information and discussion sessions have had on the perceptions of the CARTaGENE project.

2.1.2 The Communication Plan

CARTaGENE’s team strives to establish a long-term partnership and a constructive dialogue between the scientific community and society. This requires that the public be informed and that participants be consulted. This discussion and partnership approach, although so far not fully realized in population genomics, is in line with the team’s efforts to create transparency and open-mindedness at all levels of the project (Habermas 1992, 1997). The partnership approach favours values such as integrity, ethical pluralism, mutual respect, respect for others, and democracy (Health Canada 2000; Thibault et al. 2000). This approach does not adhere to a passive conception of citizenship, but, instead, integrates an active and collective one, where preoccupations and interests of citizens are taken into account (Kymlicka and Norman 1994; Emmanuel 1996; Gutman and Thompson 1997; National Institutes of Health 2002). In addition to facilitating recruitment and retention of participants, increasing participation can also contribute to

the identification and minimization of the risks associated with research. Hence, both researchers and participants have a mutual interest to take on the project together and as partners (Goggin 1986; Sclove 1998; May 2001). The information and consultation processes will be transparent. They will be either periodic or continuous, depending on the different methods planned. The communication and consultation plans require the development of procedures and mechanisms for the implementation of information and consultation campaigns. Different techniques have been implemented or are planned to inform and involve citizens, both during the research project proper, and before its launch.

Prior to the Start of the Research Project

• June 2001: First semi-public workshop on the project and its ethical and legal aspects: 125 professionals in ethics, law as well as decision- and policymaking attended the workshop.

• From July 2001 onwards: The web site of the Quebec Network of Applied Genetic Medicine (Réseau de médecine génétique appliquée, or RMGA) has been updated to inform the public about CARTaGENE’s nature and its ethical and social framework. CARTaGENE has also created its own web site (CARTaGENE n.d.). It contains mass media articles published about the project, and it has a readership of 600,000 to 800,000 individuals.

A large number of inquiries for participation have been received. The web site will be adapted to address more specific communication needs as the project evolves.

• From August 2001 onwards: Newsletters have been published regularly to facilitate liaison with experts, the media, and the public. So far, four have been produced, which are available on the CARTaGENE web site. During the course of the project, the newsletters will particularly be of interest to participants in the research. They will also be emailed to Quebec research networks and weekly magazines.

• Ongoing: Press releases and media presentations have already informed the population about the project’s objectives and its public communication strategy. A press release has been seen in November 2001 and more than 2.5 million readers have had the opportunity to be informed about CARTaGENE. The CARTaGENE project has also been presented to various key authorities in Quebec: The Information Access Commission, the Director Committee of the

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Ministry of Social Services and Health, the Statistics Institute of Quebec and the Ministry of Technology, Science and Research. Furthermore, a presentation to the Ethics Commission of the Ministry’s Council has been scheduled.

• June 2003: A second semi-public workshop with professionals in ethics, law, decision- and policy-making was held in order to update these specialists about the developments on the project and its ethical and legal aspects since the first workshop two years earlier. The ethical and legal aspects of the

CARTaGENE project have also been discussed during the Third International DNA Sampling Conference held in Montreal, in September 2002. Besides, in 2002 the RMGA has drawn up a Statement on the Ethical Conduct of Genetic Research Involving Populations (Réseau de médecine génétique appliquée 2002). All RMGA members are bound by this Statement.

• Six months before recruitment: A ‘1-800’ information hotline will be set up to facilitate public inquiries and to communicate information about the project. An information leaflet as well as posters will further promote the dissemination of information about the project’s objectives and approaches to the general public and to the participants in the research.

During the Research Stage

• During recruitment: Information sessions (general sessions in the different regions, as well as ones dedicated to specific indigenous peoples and ethno-cultural communities) will help to inform the population and will endorse a representative and diversified participation.

• Ongoing: Press releases and media presentations will provide the public with up-to-date information about the project. The 1–800 information hotline will be maintained for inquiries from research participants and the general public. On the CARTaGENE web site, comments and articles, news updates, as well as a follow-up to the citizens’ forum recommendations will be available to the public. On the web site of the Human Genetics Commission, a deliberative electronic forum, called “PopGen,” will list the FAQs about public population genomics projects.

• Ongoing: In accordance with its mandate, which guarantees a decision-making process that ensures the public and social mission of CARTaGENE, the Institut de Populations et de Génétique (IPEG) will endorse the citizens’ forum recommendations and guidelines for communication of the results of the research, after having sought advise from an independent ethics committee and a scientific advisory board. During the research project, IPEG will support the Citizens’ Committee for ongoing consultations regarding the progress of the project, in order to maintain a partnership approach.

2.1.3 The Public Consultation Plan

Obtaining the public’s opinions cannot be achieved through information sessions alone. Consultation mechanisms favouring exchanges between researchers and citizens have been planned to ensure that their opinions and views are taken into account, as established by CARTaGENE’s partnership approach (Jennings 1990; Reiser 1991).

A citizens’ forum, made up of a diverse group of people, will be organized, which will provide them with opportunities to learn about the project, to examine its ethical and social aspects, and to formulate an ethical opinion report about the project. This transparent consultation mechanism will allow citizens to get actively

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involved in the evaluation of the project and will give them the opportunity to submit an informed public opinion to the researchers, who, in

turn, will need to respond to the issues publicly (Grundahl 1995; Smith and Wales 1999, 2000). The schedule will be as follows.

• Six months before the recruitment of CARTaGENE’s participants:

Creation of an independent committee to select candidates according to the established criteria (representativeness for gender, age, education, occupation, urban versus rural residence, ethnicity, values, and interests). • First three months: Forum meetings. Selection of witnesses by experts and lay

people retained to inform the citizens’ forum, prior to the drafting of opinion. • First month: Selection of fifteen citizens by the independent committee; assembly

of a list of potential witnesses; first information session for chosen citizens, and delegation of consultation process organization to the forum.

• Second month: Second weekend information session. Proposition of a list of witnesses.

• After six months: Actual citizens’ forum (one weekend): expert testimony; ethical and social aspect report drafting; press release on citizens’ forum opinion. • Ongoing: Citizens’ forum meeting, which becomes a citizens’ committee that

maintains ongoing consultations regarding the development of the project. In addition to the citizens’ forum, the above-mentioned deliberative electronic forum, “PopGen,” on the web site of the Human Genetics Commission will provide opportunities for permanent discussion and exchange of information and ideas on ethical and social aspects of the project, and will allow citizens to express their points of view. Moreover, articles regarding the ethical, the social and the scientific aspects of the project will be made available on the web site.

2.2 Communication of the Results of the Research

Guidelines for scientific communication will be published, in order to address a number of social, cultural, and ethical issues relevant to the communication of the research results, since genomic knowledge is susceptible to interpretation according to different mental schemes, and is framed according to different (cultural and other) values. For example, the issues of stigmatization and discrimination of sub-populations are fundamental, since some of the research will be done and interpreted in terms of regions (due to the sequential structure of the project). How can we prevent the development of regional prejudice? (Bouchard 1994). How can we ensure an accurate interpretation of genomic knowledge? (Mauron 2001; Pääbo 2001). The issue of public representations of genomics will have to be dealt with, since various conceptions of the importance of genomics to human self-understanding co-exist. Therefore, a multidisciplinary team will formulate scientific communication guidelines to assist CARTaGENE’s researchers. These guidelines will tackle issues concerning (1) the social representations of genomics and the diversity of genomics’ interpretations; (2) the perception of stigmatization and discrimination in population genomics; (3) popular genetics education; and (4) the development of ethical approaches for public communication of population genomics research results.

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Public consultation of communities in genomics research is still in its infancy. Researchers are just beginning to work with named populations and they are not legally required to conduct consultations within communities. While ethical review boards often consider the implications of the research project for the community, community consultation is not required in the Research Ethics Board (ERB) approval process. There is no agreement about the ethical and policy goals that public consultation can achieve and about which methods best address these particular goals. Neither is there much agreement regarding the types of issues on which consultations should be held, nor with respect to the standards by which oversight bodies should evaluate them (Weijer et al. 1999).

Though not legally required, many factors impel investigators to engage communities.

It is difficult even for highly knowledgeable people to understand the nature and purpose of large-scale genetics databases. Moreover, due to the scale of these databases, the risk of group harm gives greater urgency to ensuring that communities understand the project, and to seeking their input regarding how the project and the groups are described and the data used. There is a growing public concern about protection for communities in genetic research, hence, initiating a dialogue with a community is imperative if we truly are to consider participants as partners (Shickle 2001). With that in mind, policy recommendations have recently been issued (National Institutes of Health 2002; Réseau de médecine génétique appliquée 2002; Commission de l’éthique de la science et de la technologie 2003).

There are clear advantages to involving communities. An ongoing dialogue creates greater comprehension and it addresses potential concerns of the public. Community involvement increases the robustness of the individual consent process, essentially making it an informed decision-making process. As stated by the National Institutes of Health (2002),

… community consultation may achieve goals not attainable through individual informed consent and standard ethics review… .Community consultation is also intended to elicit feedback regarding potential participants’ relevant values, preferences, concerns, or judgments. As partners in, rather than simply as subjects of, the research activity, consultation increases the likelihood that community members will feel empowered rather than exploited”

(National Institutes of Health 2002, 6).

However, conducting community consultations for genomics research is a delicate matter; issues of representativeness, social identity, internal politics, and cross-cultural differences abound (Juengst 2000). Conflicts may arise when individual and community interests conflict. For instance, if the community consents to research participation, individuals may still refuse to participate. On the other hand, if the community does not consent, then individuals who are identified because they are members of the community should not be approached for study enrolment.

Finally, there is the question how community involvement may be encouraged. Even with the willingness to respect values such as fair representation, transparency, and accountability, there is still a risk that the public mistrusts researchers and simply does not participate in sufficient numbers. Other DNA and data-banking projects have failed because of public concerns. For example, a company called Autogen attempted to set up a genetic database using the entire population of Tonga, an island in the South Pacific. The Tongans opposed the establishment of the database because of concerns about informed consent, and

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about the lack of prior public discussion (Burton 2002). Consequently, the project was halted. Likewise, in the U.S.A., the National Heart, Lung, and Blood Institute refused, apparently due to community concerns, to allow Boston University to close a deal with a private company for the use of the publicly acquired data from the well-known Framingham community study (Philipkoski 2001). This disregard for public opinion led to suspicion of the initiators and their motives. The founders of CARTaGENE are not immune from such risks.

4 CONCLUSIONS

CARTaGENE researchers aim to integrate an active and collective partnership approach, where preoccupations and interests of citizens are taken into account. They also aim for transparency and openness at all levels. In fact, initiating a dialogue with a community is beneficial to researchers and the public alike. Community involvement promotes a two-way communication between investigators and the community: on the one hand, investigators can inform the community about the research and its outcomes, and, on the other, the community can inform investigators about their interests and concerns. Although there are no guarantees that a community consultation will prevent harm on the basis of research findings, openness to discussion creates a forum for members to learn how to deal with scientific conclusions and potential outcomes of research.

Notes

1 This work was part of the Genomics in Society: Responsibilities and Rights project, funded by Genome Quebec.

2 ipeg is a public non-profit organization, created for the governance, administration and regulation of cartagene’s activities.

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Involving Communities: A Matter of Trust and Communication

Crossing Over

Contents

5 Involving Communities:

A Matter of Trust &Communication