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Enregistrement W3198562142 · doi:10.52214/vib.v7i.8662

Ethical Concerns About Reidentification of Individuals from MRI Neuroimages

2021· article· en· W3198562142 sur OpenAlexaboutno aff
Elizaveta Garbuzova

Notice bibliographique

RevueVoices in Bioethics · 2021
Typearticle
Langueen
DomaineMedicine
ThématiqueArtificial Intelligence in Healthcare and Education
Établissements canadiensnon disponible
Organismes subventionnairesnon disponible
Mots-clésPsychologyCognitive psychology

Résumé

récupéré en direct d'OpenAlex

Photo by Umanoide on Unsplash
 INTRODUCTION
 In the US, more than three million people have magnetic resonance imaging (MRI) scans daily.[1] MRIs are the most common way to image the brain and detect tumors, brain injuries, strokes, aneurysms, sclerosis, and other conditions.[2] After the procedure, the images are usually kept by the hospital or other medical facility. Thousands of neuroimages are shared among the researchers to increase the data available for studies and enable scientific discovery.
 l. Reidentification Using AI and Facial Recognition
 The possibility of the reidentification of an individual using AI and facial recognition technology is an ethical concern. AI can reidentify a person from the scan by reconstructing the face.[3] Despite the steps taken to deidentify the patient, such as removing or changing the name, age, identification number, gender, and postal code, according to the Mayo Clinic researchers, the software still can reidentify individuals from deidentified scans.[4] The Mayo Clinic’s study shows that AI was 83 percent successful in reidentifying the person by analyzing the scans.[5] In most cases, scientists can share anonymized information without the patient's consent.[6] The only way to anonymize the scan and to remove any personal data that can lead to reidentification is to blur the image, which would compromise the ability to read and analyze the scan, defeating the purpose of sharing the data.
 One of the fundamental values in the relationship between a physician and a patient is respect for autonomy and privacy. When subjects enter a clinical study, the researchers guarantee confidentiality. Yet, it seems impossible to protect a patient's privacy when sharing brain scans. Potential MRI image reidentification impacts research participants, healthcare providers, and government regulating bodies. I suggest that modified informed consent and the introduction of data misuse liability could improve accountability to the patient while still allowing societal health benefits associated with data sharing for research and education. Furthermore, I advocate patients who agree to data sharing be granted a small financial reward as a sign of recognition of their contribution to the medical field.
 ll. Privacy
 Privacy is a fundamental human right and especially important when sensitive medical information is shared. Deidentification can expose a research subject to unfortunate events, including but not limited to increasing cost of insurance, discrimination, and humiliation.[7] “This identification would result in an infringement of privacy that could include diagnoses, cognitive scores, genetic data, biomarkers, results of other imaging, and participation in studies or trials.”[8]
 In the same study that found the 83 percent successful reidentification, AI wrongly identified 15 percent of the patients.[9] Misidentification may lead researchers to overlook relevant information. Suppose a certain type of tumor develops predominantly in men, and patient X is a man and has the tumor and is not aware of it. If AI incorrectly labeled patient X female and skipped the tumor detection analysis of her scan, the AI would fail to detect her condition. Internal bias in AI may harm the patients even further.
 lll. Who Benefits from Sharing Scans?
 Patients who are willing to risk their privacy are not directly benefiting from sharing their brain images in their health care. The research is usually designed for the common good and for improving medical care and diagnosis generally. Often, current patients benefit future patients. Stimulating the development of treatment for future patients is an important societal benefit, but patients should know they may not benefit from sharing scans.[10] (In some cases, patients will benefit from research involving their own scans.)
 lV. Research and the Importance of Sharing Data
 Data sharing is essential for the research and development of new medical treatments that would benefit current and future patients. I argue that patients have a duty to contribute to this process by providing images because they are beneficiaries of data derived from previous patients. The existing images increase the sample size,[11] producing more valid and generalizable results. If patient X is using a certain cancer treatment, patient X is arguably indebted to past patients who contributed health data to the medical research. Because of such a gracious act by another patient, X is benefitting and thus has a duty to assist future patients by sharing data. It is wrong to be a free rider in society. In addition to past patient research, institutions use both public and private resources to train the physicians who treat patient X and to build hospitals where patient X seeks treatment
 While the argument I promote is likely not strong enough to compel participation in risky clinical trials, and it does not negate a moral right to refuse, it promotes participation in scientific research as a moral good, and sometimes, an obligation.
 Despite the low risk that the data would not be protected to the highest degree, patients ought to share it with scientists to give back to society. Furthermore, scientists may not have enough incentive to share the data.[12] Deidentification is a time-consuming manual process that society underappreciates. Despite the overall benefit to the community and the scientists’ dedication and curiosity, the deidentification process is an obstacle to data sharing that would benefit society. Recognizing the risk to patient privacy and the difficulty physicians already face, I argue that a better balance should ensure privacy while incentivizing sharing scans.
 V. Establishing Liability: A Rule to Ensure Proper Use and Prohibit Reidentification
 A government agency such as Health Canada or the Federal Drug Administration (FDA) is interested in promoting clinical studies while protecting the research subjects. Yet, Health Canada recognizes that it is impossible to eliminate the risk of reidentification.[13] Direct personal identifiers, of course, pose a higher risk to the research subject; yet there should not be a blanket prohibition of neuroimaging share. Currently, the risk is diminished by the requirement to sign a data use agreement.[14] Currently, there is no universal rule on the liability of reidentification breach; rather, there are numerous suggestions to ensure ethical data use. The European and North American Multisociety suggests that release of information and data use agreements (DUA) are critical tools in making it clear what various stakeholders are permitted or prohibited to do with the data.[15] Yet, the statement does not impose any liability for DUA breach, rather it only goes as far to suggest that data sharing should be traceable.[16] I suggest introducing and establishing a clear liability for data misuse. A controlling body, such as the FDA or Health Canada, needs to continuously check data use compliance and, in case of illegal use, apply appropriate penalties. This will strengthen the research subjects’ protection and give more reason for researchers to follow the rules.
 CONCLUSION
 As mentioned above, data sharing contributes to society in the long run. Therefore, the government must provide incentives to both scientists and patients to contribute to the medical field. The risks of reidentification need to be clearly outlined in the informed consent process, and subjects should be financially rewarded for their images. I suggest a financial reward since there are direct benefits to current patients, yet the scientists and others cut costs by accessing existing data. Thus, to be just, the savings from the industry cost-cutting needs to be given to people who are risking their privacy. The financial reward can be as little as five dollars, enough to recognize the good deed of contribution. The neuroimaging data share comes at costs to both researchers and trial participants, yet the burdens and risks can be decreased with the efforts of governmental bodies.
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 [1] Conor Stewart, “MRI Scan Volume by Facility Type U.S. 2016 and 2017,” Statista, March 24, 2021, https://www.statista.com/statistics/820927/mri-scans-number-in-us-by-facility-type/.
 [2] “MRI,” Mayo Clinic (Mayo Foundation for Medical Education and Research, August 3, 2019), https://www.mayoclinic.org/tests-procedures/mri/about/pac-20384768.
 [3] Gina Kolata, “You Got a Brain Scan at the Hospital. Someday a Computer May Use It to Identify You.,” The New York Times (The New York Times, October 23, 2019), https://www.nytimes.com/2019/10/23/health/brain-scans-personal-identity.html.
 [4] “Mayo Clinic Studies Patient Privacy in MRI Research,” Mayo Clinic (Mayo Foundation for Medical Education and Research), accessed July 20, 2021, https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-studies-patient-privacy-in-mri-research/.
 [5] “Mayo Clinic Studies Patient Privacy in MRI Research,” Mayo Clinic (Mayo Foundation for Medical Education and Research), accessed July 20, 2021, https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-studies-patient-privacy-in-mri-research/.
 [6] Tonya White, Elisabet Blok, and Vince D. Calhoun, “Data Sharing and Privacy Issues in Neuroimaging Research: Opportunities, Obstacles, Challenges, and Monsters under the Bed,” Human Brain Mapping, April 2020, https://doi.org/10.1002/hbm.25120, 3.
 [7] Jacob L. Jaremko et al., “Canadian Association of Radiologists White Paper on Ethical and Legal Issues Related to Artificial Intelligence in Radiology,” Canadian Association of Radiologists Journal 70, no. 2 (2019): pp. 107-118, https://doi.org/10.1016/j.carj.2019.03.001, 110.
 [8] Letter to the Editor Identification of Anonymous MRI Research Participants with Face-Recognition Softw

Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.

Comment cette classification a été obtenuedéplier

Prédiction distillée sur la base complète

Imitation des enseignants

Ni prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.

score de la tête « metaresearch » (Codex)0,001
score de la tête « metaresearch » (Gemma)0,003
Version: codex-gemma-dda1882f352aStatut de validation: machine_predicted_unvalidated
Catégories candidatesaucune
Catégories consensuellesaucune
DomaineSignal candidat: aucune · Signal consensuel: aucune
Devis d'étudeSignal candidat: Observationnel · Signal consensuel: aucune
GenreSignal candidat: Empirique · Signal consensuel: Empirique
Score de désaccord entre enseignants0,522
Score d'incertitude au seuil0,679

Scores Codex et Gemma par catégorie

CatégorieCodexGemma
Métarecherche0,0010,003
Méta-épidémiologie (sens strict)0,0000,000
Méta-épidémiologie (sens large)0,0000,000
Bibliométrie0,0000,000
Études des sciences et des technologies0,0000,000
Communication savante0,0000,000
Science ouverte0,0000,000
Intégrité de la recherche0,0010,001
Charge utile insuffisante (le modèle a refusé de juger)0,0000,000

Scores machine (provisoires)

Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.

Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.

Tête enseignante Opus0,301
Tête enseignante GPT0,507
Écart entre enseignants0,206 · la distance entre les deux têtes enseignantes sur ce seul travail
Statut de validationscore_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découle

Classification

machine, non validée

Prédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.

Les modèles n’ont appliqué aucune catégorie : rien dans la taxonomie ne correspondait à ce travail.
Devis d'étudeObservationnel
Domainenon disponible
GenreEmpirique

Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».

En bref

Citations2
Publié2021
Routes d'admission1
Résumé présentoui

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