Abstract
When new methods of generating information about individuals leave the confined space of research application the possibility of morally dubious application arises. The current propagation of neuroscientific diagnostics leads to new possibilities of misuse and accordingly new needs for the protection of individual privacy emerge. While most current privacy discussion focuses on sensationalist applications which aim/claim to gather information about psychological traits or even the content of thoughts, the more sober but much more realistic endeavour to gather health data from research or medical imaging studies is widely neglected. I will try to answer the question if and in how far data from neuroscientific imaging technologies require special protection. Two developments form the background of the ethical discussion: the increased diagnostic power of neuroimaging techniques and the wider distribution of this technology beyond specialized medical offices and clinics. The first development is likely to broaden the scope of data, which are considered relevant for health care and related decisions. The latter is likely to widen the scope of persons who might have access to diagnostic results without at the time taking the role of a doctor towards the person diagnosed. I will argue that neuroimaging data are currently primarily medical data and that the associated standards of consent and confidentiality are worth protecting. Even nonmedical applications of neuroimaging technology inherit too much of the diagnostic power for which they were originally invented, for it to be advisable to drop the accompanying consent and confidentiality requirements.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Notes
E.g. professional journals such as ‘Neuroethics’, or ‘American Journal of Bioethics—Neuroscience’ or public magazines like ‘Gehirn und Geist’.
Early diagnosis’ will in the following will be used for individual risk scores. These scores estimate the risk of a person to develop certain diseases. Thus they give probabilistic predictions.
This is because mental content is a type of meaning and according to Putnam ‘meanings just ain’t in the head’. ([1]: 227).
For example the British MRC Cognitive Function and Ageing Study (MRC CFAS) [18].
The impact of the MRC CFAS for example is discussed in [2].
The fact that the use of neuroimaging will be associated with medical offices or other institutions does have a direct impact on privacy issues. It forestalls the possibility of private use without any data trail, which is possible in DTC genetic tests. While current debate in the medical community favours institutional and laboratory testing—genetic and neuroimaging alike—with medical consultancy, the latter does tend to amass person related data which are not under the control of the individual itself.
Cf. The no-lie-mri website: http://noliemri.com/ [last accessed 23/08/2011]
For a critical appraisal cf. [4].
This possibility of context transfer of neuro-imaging data is discussed in [5].
These reactions of the person herself and her social surroundings are symptoms of a deeper confusion. The person in question does not have a disease, is not diseased in the common use of the word. On the other hand she cannot really be called healthy in the full sense of this term. Our standard conception of health and disease fails, neither the subjective nor the objective concept of disease adequately describes this condition, and neither are our moral norms prepared to encounter it. Cf. [8].
For example the US Genetic Non-Discrimination Act, cf. [9].
Walter/Schleim deny the possibility of truly informed consent, exactly because they suspect that informed consent is given for data collection and use in toto and not for each single use of the data. Cf. ([5]: 165).
References
Putnam, Hilary. 1975. The meaning of ‘meaning’. Mind, Language and Reality, Philosophical Papers Vol II, 216–271. Cambridge: Cambridge University Press.
Jagger, Carol, Ruth Matthews, James Lindesay, Thompson Robinson, Peter Croft, and Carol Brayne. 2009. The effect of dementia trends and treatments on longevity and disability: A simulation model based on the MRC Cognitive Function and Ageing Study (MRC CFAS). Age and Ageing 38(3): 319–325. doi:10.1093/ageing/afp016.
Kulynych, Jennifer. 2002. Legal and ethical Issues in Neuroimaging Research. Brain and Cognition 50: 345–357.
Schleim, Stephan, and Jonathan P. Roiser. 2009. fMRI in translation: The challenges facing real world applications. Frontiers of Human Neuroscience 3(63): 1–7.
Walter, Henrik, and Stephan Schleim. 2007. Gedankenlesen – Eine Herausforderung für die Neuroethik. In Ohne Hirn ist alles nichts, ed. Hoppe, Christian and Frank Vogelsang. Neukirchen-Vluyn: Neukirchner.
Scott, Charity. 2000. Is too much privacy bad for your health? An introduction to the law, ethics and HIPAA rule on medical privacy. Georgia State University Law Review 17(2): 481–530.
Pin Le Corre, S., C. Scodellaro, and P. Arwidson. 2009. The image of patients and caregivers in the social perception of Alzheimer’s disease—Results from a literature review and a qualitative study considered with this target. Alzheimer’s & Dementia. The Journal of the Alzheimer’s Association 5(4): 233.
Murphy, Dominic. 2009. Concepts of Disease and Health. The Stanford Encyclopedia of Philosophy (Summer 2009 Edition), Edward N. Zalta (ed.) http://plato.stanford.edu/archives/sum2009/entries/health-disease/ Accessed 08/02/2011.
United States Congress 2008. Genetic Information Nondiscrimination Act of 2008 (Pub.L. 110–233, 122 Stat. 881, enacted May 21, 2008).
O’Neill, Onora. 1997. Genetic information and insurance: Some ethical issues. Philosophical Transactions of the Royal Society London B 352: 1087–1093.
Kitcher, Philip. 1997. The lives to come. New York: Touchstone.
Gitelman, Darren R. 2003. Acalculia: A disorder of numerical cognition. In Neurological foundations of cognitive neuroscience, ed. D’Esposito, Mark. Cambridge: The MIT Press.
Farah, Martha J., Elizabeth M. Smith, Cyrena Gawuga, Dennis Lindsell, and Dean Foster. 2008. Brain imaging and brain privacy: A realistic concern? Journal of Cognitive Neuroscience 21(1): 119–127.
Farah, Martha J. 2004. Neuroethics: A guide for the perplexed. Cerebrum, http://www.dana.org/news/cerebrum/detail.aspx?id=1080. Accessed 15 September 2011.
Conrad, Peter. 2007. The medicalization of society: On the transformation of human conditions into treatable disorders. Baltimore: Johns Hopkins University Press.
Haverkamp, F., U. Eiholzer, M.B. Ranke, and M. Noeker. 2000. Symptomatic versus substitution growth hormone therapy in short children. From auxology towards a comprehensive multidimensional assessment of short stature and related interventions. Journal of Pediatric Endocrinology & Metabolism 13: 403–408.
President’s Council on Bioethics. 2003. Beyond Therapy: Biotechnology and the pursuit of happiness. Washington D.C.
British MRC Cognitive Function and Ageing Study (MRC CFAS), http://www.cfas.ac.uk/pages/background/index.html Accessed 15 September 2011
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Heinrichs, JH. The Sensitivity of Neuroimaging Data. Neuroethics 5, 185–195 (2012). https://doi.org/10.1007/s12152-011-9141-5
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12152-011-9141-5