Nana Cecilie Halmsted Kongsholm
Søndre Campus, Building: 16-1-24
2300 København S
I work within bioethics and medical ethics, focusing particularly on questions of consent, trust, vulnerability, exploitation and privacy.
I am part of the research project Convergent Ethics and Ethics of Controversy (CEEC), which seeks to rethink the ethics and democratic regulation of novel biotechnologies.
Within this research framework, I currently focus on the question of how to conceptualise and institutionalise proper consent in the context of new biotechnologies.
Proper consent is an ethical cornerstone in biomedical practice and intervention: for a given procedure or intervention to be ethically defensible, it requires the voluntary, informed consent from the individual at the receiving end. This is so in a wide range of practices within the biomedical sphere, ranging from surgeries to experimental drug trials and genetic testing. The consent requirement is firmly held in such cases because the intervention or procedure in question has the potential to severely affect the interests of the receiving individual, and by insisting on the individual’s consent we, it is held, respect their autonomy understood as their ability and right to guard their own interests.
However, many novel biotechnologies – although they are situated within the biomedical realm – do not, in their nature, easily conform to the paradigm of individual consent. On the one hand, it seems clear that the use of certain novel biotechnologies can not only affect the interests of the individual ‘user’, but also those of their immediate relations, their community or even large populations. Examples include the use of enhancement technologies (which may affect the interests of non-users in terms of increased inequalities, and psychological pressure to use such technologies to ‘stay in the game’) and predictive genetic testing (e.g., where one woman’s decision to find out whether she is a carrier of a mutation in the gene for breast cancer can potentially severely affect the interests and life prospects of her daughters and other close female relatives). On the other hand, the use of other novel biotechnologies do not affect its ‘users’ directly, or at least in the standard sense associated with consent – this is e.g. the case in large state-operated biobanks integrated in national health care systems that provide statistical data required for improving medical treatments (where the individual donor is hardly affected in any manner that can be considered affecting their interests in a significant way).
Such cases pose challenges to the theoretical foundations of the standard conception of consent, when applied to novel biotechnologies. As such, they furthermore prompt us to re-examine whether our current consent schemes in practice are adequate to accommodate the nature of novel biotechnologies, and to consider alternative regulations and models.
To respond to these matters, I focus on two issues:
1) Indirect influence and consent Can non-users of certain biotechnologies ever have a claim to consent? In the positive case, how need one’s interests be affected so as to give rise to a claim of consent? What values support this? And how can we effectuate such a scheme of consent in a just and meaningful way?
2) Trust and accountability as alternatives to informed consent
Certain new biotechnologies have the potential to affect the interests of many members of the public, however are not easily governed by the standard paradigm of informed consent. In such instances, can a paradigm of trust in and accountability of the institutions in questions uphold and protect the public’s interests in an adequate way? If so, how should this influence our practices for consent and for governance of institutions?
- Political Philosophy
- Applied Ethics
- Medical Philosophy