AUTHOR
Penny Duquenoy, Bern Martens and Norberto Patrignani

ABSTRACT

Introduction

In Europe, and most industrialised countries, ICT competences are a prerequisite for the majority of jobs, and even for life as a fully functioning member of society in general. In recognising this, universities, colleges, high schools, careers developers, train-the-trainers organizations, etc. have introduced ICT courses and programmes. But, ICT also introduces many, often quite new, ethical dilemmas for its developers and users (both professional and otherwise). Almost all of the above mentioned courses and programmes, however, focus exclusively on technical-instrumentalist competences, while neglecting ethics. This paper aims at analysing this gap in various ICT curricula and proposes content as well as methodology to fill it.
We do this by focussing successively on various contexts of ICT education.
Professional ICT education at universities and colleges (and equivalent)

Whether at academic or professional level, introducing ethical issues of ICT in higher education ICT curricula often constitutes a real challenge. Teachers are faced with students who have followed years of courses, all of them concentrated only on the technical side. A suggestion for introducing ethics in these situations is to start from real case analysis with a bottom-up approach. One example of a fruitful methodology was tested “in-field” at Politecnico di Torino in Italy for teaching computer ethics to PhD students in engineering (computer science, etc.). It is composed of four steps: describe a real controversial case, identify all stakeholders and their interconnections (“stakeholders’ network”), identify the ethical issues that arise from the scenario and finally, try to define possible alternative scenario(s). With this approach the students’ reaction is usually quite positive since they start from a familiar, technical context (e.g. a “national DNA database”) and then, with the support of the teacher, they “climb” the path towards non-technical issues like the social and ethical consequences of their projects.

In a verbal answer to the UK House of Lords Constitution Committee (February 2008) meeting to discuss “Surveillance: Citizens and the State”, and in response to a question regarding the training of IT professionals in privacy considerations, the reply was “… it is included in the exams and the courses but I have to say that most of the students skip that section because there are not enough marks on it and it is worthy but boring.”

In the Dutch speaking part of Belgium (Flanders), Leuven University College is currently the only institute of higher education where a course on IT ethics features on the IT programme (professional bachelor level). Not unlike the above mentioned Italian course, it focuses on specific cases, student projects, discussion and debate. In so doing, it proves fruitful not only to get future professionals thinking about the ethical aspects of their trade but also promotes several more general “soft skills” (arguing, presenting, debating, etc.). The course is an optional one, offered in the third (and final) year of the programme, and tends to be chosen by about 25% of the students. So, there definitely is an audience for such courses among even the most technically oriented of students. It must be noted however that this particular course is taught by a lecturer whose specialisation is in system management, network security and computer forensics. This probably contributes significantly to technical students taking an ethics course seriously (and voluntarily)…

Secondary (and primary) education

There has been a tendency in European schooling to focus on teaching pupils how to use ICT for their school work, and of course as part of a wider educational approach aimed at improving “digital literacy” and students’ employment opportunities. The substantive issues of “computer ethics” typical in conferences such as ETHICOMP, are not generally addressed other than aspects of computer misuse, and the dangers posed to school children. These latter issues appear to be brought in under a category of “eSafety” and serve to (a) educate children in the use (or rather mis-use) of mobile phones used as cameras, and the dangers of chatting online and (b) meet school policy and risk-reduction exercises. For example, the UK National Education Network states: “All schools have a responsibility to ensure that all pupils and staff access the internet safely and responsibly. Failure to do this could result in disciplinary or legal action taken against individuals, head teachers and governing bodies.”

The Rose Review (a report on the use of ICT in UK schools) published in March 2009 promotes the use of ICT in schools, and encourages greater use at primary level. Two points are worth mentioning here:

1. pupils use ICT effectively to communicate their ideas and to present their work, but they are less skilled in collecting and handling data and in controlling events using ICT;
2. teachers tend to give more attention to those aspects of ICT where they themselves feel confident.

And there are strong indications that the situation in most other European countries is similar.

The Flemish government recently published ICT learning objectives for children of age 12 and 14 respectively. The safe and responsible use of ICT features prominently among them, but if you look at the available teaching materials as well as current educational practice, the stress is almost exclusively on “utilitarian” features. The explanation for this state of affairs may well be the one given above: both teachers as well as textbook authors lack competence in ICT ethics.

Teacher training

We argue that, to meet the education needs identified above, ICT ethics must be treated in teacher training (at all levels, with the possible exception of kindergarten). In the Leuven University College teacher training programme, a course on ICT ethics has been compulsory for (future) ICT teachers since 10 years. In the fall of 2009, the course will for the first time also be offered as an option to students in other topics.

REFERENCES

http://www.publications.parliament.uk/pa/ld200809/ldselect/ldconst/18/8022002.htm

http://www.nen.gov.uk/

From a report on the Rose Review (Essex Primary ICT curriculum Newsletter):
http://www.e-pic.org.uk/news/newsletter_summer_2009.pdf

Bern Martens, IT, Ethics and Education: Teaching the Teachers (and their Pupils), in Goujon, P. et al. (eds.), IFIP International Federation for Information Processing, Vol. 233, The Information Society: Innovations, Legitimacy, Ethics and Democracy, Springer, Boston, 2007, pp. 181-194

AUTHOR
Göran Collste

ABSTRACT

Within applied ethics moral problems in different spheres of society like medicine, politics and technology are analysed. Applied ethics transcends disciplinary borders. Its point of departure is either ethics or the sphere of application. Thus, one way to do applied ethics is that ethicists use their theories and methods for analysing moral problems in, for example, medicine, politics or technology. Another way is that researchers or professionals confront ethical problems within their sphere or research or practice. Applied ethics is relevant both for ethicists and for researchers in different societal spheres and it has become more and more common that ethicists cooperate with researchers from other disciplines in multi-disciplinary projects.

There are some established methods in ethics. Among them are conceptual analysis to achieve clarity, argumentation analysis to structure and assess arguments and theory construction to develop and justify normative views. These methods are familiar and we can recognise them from the works of Rawls, Dworkin, Kymlicka etc. However, for applied ethics these methods are not sufficient. When the applied ethicist is analysing moral issues in a specific sphere, for example medicine, for the sake of relevance he or she needs empirical knowledge about the sphere in question. The applied ethicist has to acquire empirical knowledge and/or cooperate with researchers within the sphere of application. Hence, it is necessary with multi-disciplinary work in applied ethics. But, when a multi-disciplinary project develops, due to the different disciplinary outlooks of the researchers involved there are many possible misunderstandings and confusions.

Recently, a new multi-disciplinary project titled Personal Health Monitoring – Ethics financed within the European FP 7-program started. Personal health monitoring comprises all technical systems that are collecting, processing and storing data linked to a person, that allows monitoring the parameters of the person and that leads to health-monitoring about the person. Examples of the new technology are sensors in patient’s clothes or implanted in a patient’s body, home facility management systems etc. The aim of the research project is to develop multidisciplinary tools for ethical assessment of emergent technologies for personal health monitoring in order to both achieve new knowledge about the ethical aspects of the technology and to influence the direction of the emergent technologies towards realisation of health care values. Disciplines involved are besides applied ethics, psychology, informatics, and organisation theory. In this paper, the new research project will be used as a case for discussing problems and benefits with multi-disciplinary applied ethics.

From the beginning the researchers involved in the new project had to overcome some terminological misunderstandings and diversities. For example, a first step was to develop “taxonomy”. But what does that mean in this context? Another task was to construct a “dependency map”. What is that? These are just two examples of terms that were foreign to some project disciplines but established within others and hence created some initial misunderstandings. A first aim of the paper is to discuss how terminological differences can be overcome.

What methods in ethics are useful in this kind of projects? Which other disciplinary methods could be used? How can methods in ethics and other disciplines, for example psychology and informatics be combined? These are some question that will be discussed in the paper.

The purpose of the paper is to contribute to the methodological discussion within applied ethics and broader, to the methodology of multi-disciplinary research.

AUTHOR
Valérie Chanal and Chris Kimble

ABSTRACT

Communities of practice were originally described in terms of a set of emergent social arrangements, termed legitimate peripheral participation, that act as a vehicle for spontaneous and situated learning (Brown and Duguid 1991; Lave and Wenger 1991). Later, what was essentially a social dynamic within a relatively small group became, first, a theory of organizational learning (Wenger 1998) and was then presented as a tool for knowledge management (Wenger, McDermott et al. 2002), to be deployed by consultants as a component from their knowledge management toolboxes. The theory behind the ‘implementation’ of communities of practice, holds that it is possible to bring people together with the objective of sharing knowledge and then to ‘cultivate’ a community of practice that will produce a planned and predictable benefit for the host organization.

In our paper, we will portray this move as a shift from the spontaneous, emergent and creative groups described in the early work – to borrow a term from Hutchins (1995), communities that are ‘in the wild’ – to the cultivated, confined and controlled groups described in Wenger’s later works – in effect, communities that have been captured, tamed and domesticated.

This second view of ‘tame’ communities of practice has often lead them to being presented as a form of risk free, social-based technology for knowledge management (e.g. Lesser and Storck 2001). According to this view, traditional ICT tools will take charge of the more easily captured and codified explicit knowledge, while communities of practice provide a solution to the management of the more problematical tacit knowledge, which, because it cannot be transferred directly, is seen as a key source of competitive advantage (Grant 1996). From an organization’s standpoint, this view has some obvious attractions, but it is not without its problems.

Empirical studies of the ‘implementation’ of communities of practice suggest that it may not easy to create a community of practice to order. Gongla and Rizzuto (2004) note that when an organization ‘spotlights’ a community of practice and tries to manage it, the members may simply pretend to disperse and go underground. Similarly, Thompson (2005) provides an example of how a company attempted to ‘clone’ a community of practice and spread its example of ‘best practices’ throughout the organization. As with Gongla and Rizzuto’s example, in the end, the members of the group withdrew and the company only succeeded in stifling what it sought to nurture.

The objective of this paper is to examine the view that communities of practice can be used as a tool for KM by asking if it is possible to instrumentalize them. Within the context of our ‘wild’ vs ‘domesticated’ typology, the questions we ask are the following: can organizations instrumentalize communities of practice in order to create and share knowledge? What are the risks of instrumentalizing communities of practice? What (if any) part of communities of practice should stay wild and what parts can be domesticated in the service of organizational learning?

To answer these questions, we will use the findings of action research that was carried out in a small microelectronics firm over a period of two years (Cappe 2008). The company develops microelectronic systems for the medical, telecommunications, automotive and aerospace markets. An initial analysis of the knowledge management systems in this organization highlighted the limits of an existing intranet as a means of knowledge sharing. It appeared that the people who needed the technical knowledge it contained did not use it because the knowledge was not sufficiently ‘situated’. As a result of this study, the management of the company began to explore the possibility of setting up communities of practice to facilitate knowledge sharing in certain key technical and strategic areas.

The aspect of this case that is of particular interest and value is that it was possible to follow the design and development of two intentionally formed communities of practice from their very beginnings. These communities were formed around two groups of people who played a key role in the company: project managers and technical experts. Before this experiment, these two groups had little opportunity to meet and to exchange knowledge about their practices.

The results show that there were indeed some positive aspects to bringing people together in such a community of practice. For example, in the same way as the claims processors in Wenger’s study (Wenger 1998), it appeared to answer a deep demand for more social links between persons doing the same job in an organizational context of heavy control and tight quality management procedures. However, it also brought to the surface areas of friction, especially with the management of the company, with whom the conditions for the existence of these groups, their identity and their autonomy of action, had to be constantly negotiated.

The way an organization is capable of absorbing these tensions by redefining its own rules appears to be a key factor in the success of such an experiment. The outcome of the learning within a community of practice cannot be confined to the boundaries of the community. We observed that when the management resisted the group’s suggestions of improvement, this led to the demotivation of the members. This demotivation and resentment of the community’s members was linked to a search for legitimacy within a company where the only activities acknowledged as valuable were those that were project oriented.

Our conclusion is that the study illustrates that the instrumentalization of communities of practice is a managerial myth. Thinking of communities of practice as a safe and domesticated social-based KM technology is flawed. Rather we should think of the ‘implementation’ of communities of practice as an experiment that carries with it the risk of creating a potentially disruptive ‘untamed’ element that can act as a lever for unpredicted organizational change.

In the closing section of the paper, we indicate how this work could be developed further. We link the literature on communities of practice with that on organizational improvisation (Weick 1998) to argue that other forms of spontaneous social phenomena, such as storytelling (Salmon 2008), could be analyzed using a similar perspective. We believe that the connection between practice, often seen as a routinized way of doing something, and improvisation, usually seen as a creative and spontaneous act, is one that deserves further research.

REFERENCES

Brown, J. S. and P. Duguid (1991). “Organizational Learning and Communities of Practice: Toward a Unified View of Working, Learning, and Innovation.” Organization Science 2(1): 40-57.

Cappe, E. (2008). Conditions d’émergence et de développement des communautés de pratique pour le management des connaissances. École doctorale de Sciences de Gestion. Grenoble, France, Universite Pierre Mendes. PhD: 413.

Gongla, P. and C. R. Rizzuto (2004). Where did that community go? Communities of practice that “disappear”. Knowledge networks: Innovation through communities of practice. P. Hildreth and C. Kimble, Idea Group Publishing: 295-307.

Grant, R. (1996). “Toward a Knowledge-Based Theory of the Firm.” Strategic Management Journal 17(Special Issue: Knowledge and the Firm): 109 – 122.

Hutchins, E. (1995). Cognition in the Wild. Cambridge MA, MIT press.

Lave, J. and E. Wenger (1991). Situated Learning: Legitimate Peripheral Participation. Cambridge, Cambridge University Press.

Lesser, E. L. and J. Storck (2001). “Communities of Practice and Organizational Performance.” IBM Systems Journal 40(4): 831-841.

Salmon, C. (2008). Storytelling, la machine à fabriquer des histoires et à formater les esprits. Paris, La Découverte.

Thompson, M. (2005). “Structural and Epistemic Parameters in Communities of Practice.” Organization Science 16(2): 151 – 164.

Weick, K. E. (1998). “Improvisation as a Mindset for Organizational Analysis.” Organization Science 9(5): 543-555.

Wenger, E. (1998). Communities of Practice: Learning, Meaning, and Identity. New York, Cambridge University Press.

Wenger, E., R. A. McDermott, et al. (2002). Cultivating communities of practice: a guide to managing knowledge. Boston, Harvard Business School Press.

AUTHOR
Terrell Ward Bynum

ABSTRACT

Predicting the future of society is a risky activity typically left to fools and sages. Nevertheless, this presentation will contain outright predictions about the future of society and the future of ICT-related ethical issues. It will presuppose James Moor’s “policy vacuums” account of the nature and importance of information ethics, and it will assume the truth of Norbert Wiener’s prediction that cybernetic machines will play an increasingly important social role as time goes on. Most importantly, it will take as a central assumption Wiener’s prediction that machines and living organisms, increasingly, will be merged together to create entities that are part biological and part mechanical. Today, such beings are often called “cyborgs” (cybernetic organisms).

According to Wiener, all animals and some machines are cybernetic entities that take in information from their environment, then process that information in ways that empower them to react to their environment and adjust themselves to it. Such information processing activities include, for example, perceiving, recognizing, categorizing, remembering, calculating, inferring, deciding, acting, and so on. In the past, some philosophers have assumed – mistakenly, I believe – that only humans (and perhaps angels, devils and gods) can engage in such “sophisticated” activities as categorizing, recognizing, inferring, deciding and acting. In this presentation, I will assume that all humans, many animals, and some machines can engage in such activities. I also will assume that “aspects, parts and pieces” of such information processing activities can be electronically instilled into objects and organisms that did not have them in the past – thus, creating “ambient intelligence”.

Given the above-described assumptions, I will argue that today’s “information societies” are rapidly evolving into societies in which humans, other animals, and machines – even buildings, clothing, furniture, roadways, and other objects – will be interrelated and coordinated by ambient intelligence technology to create increasingly complex “cyborgian units”. Thus, when virtually everything interacts and communicates with everything else, and the difference between “online” and “offline” essentially disappears, then individual persons, particular animals, certain machines and other entities will be electronically united and coordinated to create powerful “cyborgian units” and thereby achieve previously unattainable goals. In such a society, a person or an animal or a machine or an object could function simultaneously as part of many different cyborgian units; and those units could also be combined to generate even larger and more sophisticated “meta-units”. Finally, all such units and meta-units working together could constitute an entire society – becoming, quite literally, a “cyborgian society”.

In the coming cyborgian societies, the above-described units and meta-units will utilize capacities and qualities of many different entities to bring into existence a staggering number of new possibilities that could not have been realized in the past. The result will be innumerable “policy vacuums” (to use Moor’s apt turn of phrase) that cry out for new laws, new rules of behavior, and new standards of good practice – new “policies” to assure that cyborgian societies will be ones in which justice and ethical behavior are encouraged and preserved.

AUTHOR
J. J. Britz and Ms S. R. Ponelis

ABSTRACT

Introduction

The global migration of people is an authentic sign or the times we are living in. The global workforce, amongst others, includes many who are skilled and come from rich educational heritages. They seek new opportunities to share their knowledge in the newly formed global communities; this includes the many international scholars that travel around the world attending conferences in order to obtain feedback and input to their work prior to publication. However, not all academics are born equal: for example, conferences held in African countries are few and far between and often not attended by many academics from outside of Africa, which necessitates these academics to travel more widely to conferences in Europe and North America. However, no African academic (traveling on a passport from an African country), even with impressive credentials, can merely get on an airplane to attend such a conference, not only because of geographic and financial reasons, but also because of political reasons. Most European countries, as well as the USA and Canada, have strict visa requirements for most African countries. And although technology makes it possible to make presentations virtually, not being physically present does limit the opportunities for knowledge sharing and exchange – an important component of such gatherings and one of the reasons conferences continue to be held and attended in spite of the current economic climate.

To put this in practical terms: why should scholars from Africa, just because of their country of origin, be restricted in many ways to travel to Europe to attend conferences while the same does not apply to their counterparts from countries like the USA and Canada? This state of affairs seriously hampers development and creativity that will benefit humanity by limiting the ability to learn from one another and to share knowledge. Thus it is a matter of social justice, not only because of the limits placed on international travel (irrespective of the reasons given as justification) but also because of the impact that this limitation imposes on human development. The global movement of people demand a fresh look at the interpretation and application of social justice – particularly as it pertains to the rights of nation states and the right of freedom of movement of scholars to share their knowledge on global platforms.

The intention of our paper is not to provide clear-cut answers to all the questions relating to the international movement of people, but to open the debate following our claim that we need to rethink, from a social justice perspective, the international movement of particularly African scholars and their ability to share their knowledge globally.

The research problem and content

It is this moral imperative that prompts our research question which specifically focuses, from a social justice perspective, on the political hindrances that many African scholars face in their efforts to attend and participate at international conferences in Europe and North America. In using Amartya Sen’s capability approach we argue that the global sharing of knowledge between scholars should be regarded as one of the ‘basic capabilities’ (Sen, 1993) since it does not only create opportunities for the development of Africa , but it is also instrumental to our freedom and to achieve human well-being. The strict travel arrangements by most European countries and the USA and Canada for African scholars form part of what Sen refers to as the social and structural constrains that influence and restrict global human development and well being.

We argue therefore that the international community has a moral and legal responsibility to create a more open and fair structure that should support the freer flow of knowledge between African scholars and their counterparts in Europe and North America. We view justice as one of the most important virtues regulating human behavior in the global knowledge society. We therefore use it as a normative instrument to argue our case for a fairer structure that will allow Africans more flexibility to travel and at the same time acknowledging the rights and responsibilities of the nation-state towards it own citizens (for example national security, human trafficking and disease control) but also towards global citizens (allowing scholars more from African countries more freedom of movement). We identified and use five categories of social justice in our analysis. These are:

• Justice as recognition according to which the moral dignity of fellow beings necessitates equitable and fair treatment with respect to freedom of movement.
• Justice as reciprocity that requires fundamental fairness with respect to exchanges between academics as a group and in particular that the same rules and norms will apply in similar situations.
• Justice as participation that requires the creation of equal opportunities for scholars to exchange their knowledge at international conferences.
• Justice as enablement which demands from society at large to enable the self-enablement and self-determination of individuals.
• Justice as contribution that supports our contention that society should be structured in such a manner so that scholars are able to make a productive contribution to their own and the broader global society.

Based on our moral analysis we develop a set of moral guidelines and we propose an ‘academic travel card’ for African scholars that should meet the criteria of social justice. According to this, such a card should be agreed by all participating countries and as an expression of global justice it should be embedded in international rules and regulations that will allow African academics the same basic rights of freedom of movement, freedom of expression and freedom to privacy as their counterparts in Europe and North America. We deliberate also on the different rights and responsibilities of both the nation-states as well as African scholars regarding the use of the proposed travel card.

Structure of the paper

The paper is structured in the following manner: first, we emphasize the importance of the exchange of knowledge that contributes to human development. As indicated we base our discussion on Sen’s capability approach. Following from this, we elaborate specifically on the problems that African scholars experience in this regard whilst at the same time seeking to strike a fair balance between rights of nation-state and the rights of individuals to freedom of movement. We make use of both empirical evidence as well as statistical data in support of our argument. In the third part of the paper we analyze the abovementioned issues from a social justice perspective and in the final part of the paper we developed a set of moral guidelines and propose an ‘academic travel card’ for African scholars that should meet the requirements of social justice as argued in the previous part.

REFERENCES

Summary Report. 2009. Academic Freedom In West African Universities, University Of Ghana, Legon, 15-16 April 2009 [online]. Available: http://scholarsatrisk.nyu.edu/Documents/Ghana_report.pdf (accessed July 24, 2007)

Britz, J.J. 2007. Critical analysis of information poverty from a social justice perspective. D.Phil thesis, University of Pretoria.

Renewing the African University [online]. 2005. Available: http://www.aau.org/gc11/adocs/pdf/eng/aau-acu-sauvcaprog.pdf (accessed July 23, 2009).

Sen, A. 1993. Capability and well-being. In: The quality of life, edited by M. Nussbaum and A. Sen. Oxford: Clarendon Press.

Unesco Academic Freedom Conference. 2006. Problems and Challenges in Arab and African Countries, Alexandria, Egypt, 10-11 September, 2005.

AUTHOR
M. C. Bottis and H. T. Tavani

ABSTRACT

The principle of informed consent is a standard feature in medical research, including international documents, statutes, protocols, guidelines and other “hard” or “soft” law texts. This principle is ethically significant for participants (i.e., human subjects) in research in that provides both: (a) respect for the person, and (b) protection of the person’s autonomy. So, there are good reasons for defending and preserving the principle of informed consent in medical research involving human subjects. However, research in population genomics, which depends on DNA databanks and data mining technology, has introduced some serious challenges for the informed-consent process.

1. Background

The principle of informed consent originates from a strict, two-part relationship: the physician-patient relationship. Informed consent in the setting of medical research has usually involved patients who are required to take a drug (or placebo). In this context, the subject must know the nature and purpose of the research, as well as its consequences and risks. Consent must be expressed (or explicit), specific, and documented. International documents such as the Oviedo Biomedicine Convention also require that some additional information be given to the research subject – viz., information about:

• any foreseen potential future uses, including commercial uses of the research results, data or biological materials;
• the source of funding of the research project;
• access to the research results in the future.

Undue “influence concerns,” such as misuse of a position of trust, have also led to additional safeguards for human subjects who voluntarily participate in research.

2. DNA Databanks

We argue that the donation of tissue, blood samples, etc. by human subjects to DNA databanks used for population-wide research purposes has introduced some challenges for the informed-consent process. Initially, one might assume that that an individual’s donating some blood or tissue carries no risk of immediate harm to that consenting individual. Indeed, the act of giving a sample of one’s blood, hair, or body tissue for research would seem harmless; in fact, refusing to do so might be interpreted as an “antisocial” act that also violates the principle of “solidarity” underlying DNA research. Consider that without these research “materials,” there can be no DNA research at all.

However, donating one’s blood, etc., for research in a DNA databank presents some new challenges for the informed-consent process because of the special nature of population-wide genomic research projects and because of the kinds of technologies involved (e.g., data mining). For one thing, the familiar two-part relationship involving researcher and patient is seriously threatened in these kinds of projects. It also raises an important question: What is the nature of a “population’s consent”? And this question, in turn, raises two additional questions: (i) What is it that a whole population needs to know before consenting? (ii) How can we ensure “fair consent” from everybody involved? Consider that any harm resulting from “unconsented” and unprincipled research in this area is directed not only against a person, but against an entire population.

Another challenge has to do with the so-called DNA/gene factor; we are not yet sure what it is that we are providing when we donate our DNA for research. For example, is it information about our “entire self” – i.e., our past, present and future? Is it information about who we are now, at the moment of donation, or is it also a “future diary”?

An additional challenge for the consent process in this area of research has to do with Onora O’Neill (2002) calls the “opacity of consent.” The consent process in DNA research involving databanks and data mining is “opaque” or nontransparent because of the secondary uses of that information made possible by data mining. Suppose a person, A, consents to procedure B. Further imagine that B entails C (and that A is unaware of C). Does it follow that A consented to C? This problem arises in DNA research because of the kinds of subsequent uses of information made possible by data-mining technology.

The solutions put forth thus far to the challenges affecting informed consent in population-based genomic research include aspects of three traditional models:

• presumed consent (the researcher takes the tissues, presuming that the person from whom they originate wouldn’t disagree);
• informed consent (documented by signing pre-drafted forms);
• community consent (the ‘leader’ of a community consents for every member and the members consent, also, for themselves).

We argue that these models are inadequate. Our proposed solution examines some alternative schemes, including the “charitable trust” model for informed consent.

REFERENCES

Andersen B. & Anrason E., Iceland’s database is ethically questionable, BMJ 1999, Jun 5;318(7197):1565

Austin M.A., Hardin C. & McElroy, Genebanks: a comparison of eight proposed international genetic databases, Community Genet. Vol. 6, no 1, 2004, 37-45

Bottis, M., deCode Iceland and Genetic Databanks: Where ‘Consent’ to Generic Research Means Patenting a Nation’s Genes. In Proceedings of the Ethicomp2005 Conference: Looking Back to the Future, Linkoeping, Sweeden, 2005

Gertz R., Withdrawing from Participating in a Biobank – a Comparative Study”, European Journal of Health Law, vol. 15, no. 4, pp. 381-390, 2008

Hansson M.G.G., Building on relationships of trust in biobank research, JMed Ethics vol. 31, no 7, 2005, 415-418

Harper P.S., Research samples from families with genetic diseases: a proposed code of conduct, BMJ 306, no 6889, 1993, 1391-1394

O’Neill, O., Autonomy and Trust in Bioethics. Cambridge: Cambridge University Press, 2002

Rothstein M.A., Expanding the ethical analysis of biobanks, J Law Med Ethics vol. 33, no 1, 2005, 89-101

Santosuosso A., The right to genetic disobedience: the Iceland case, in Ethics and Law in Biological Research, ed. Mazzoni C.M., Kluwer Law International, 2002, pp. 163-172

Tavani, H.T., Genomic Research and Data-Mining Technology: Implications for Personal Privacy and Informed Consent, Ethics and Information Technology, Vol. 6, No. 1, 2004, 15-28

Winickoff, D. & Winickoff R., The Charitable Trust as a Model for Genomic Biobanks, 349 New England Journal of Medicine 12: 1180-1184, 2003

Zoega T. & Anderson B., The Icelandic health sector database: decode and the “new” ethics for genetic research, 1999