Ethical Medical Data Donation: A Pressing Issue

Krutzinna, Jenny; Floridi, Luciano

doi:10.1007/978-3-030-04363-6_1

Cited by 7 publications

(1 citation statement)

References 6 publications

(3 reference statements)

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“…In some venues, researchers are required to submit data sharing statements for clinical trials along with their manuscripts [ 132 ]. Even so, such data sharing schemes have raised issues as data subjects’ preferences and control are rarely addressed, with their participation limited in governance structures for sharing medical data [ 82 ]. Advances in pervasive and wearable technologies also bring attention to enabling users to track and share self-collected data via health apps [ 77 , 88 , 98 , 122 ].…”

Section: Related Workmentioning

confidence: 99%

Contributing to Accessibility Datasets: Reflections on Sharing Study Data by Blind People

Kamikubo

Lee

Kacorri

2023

Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems

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To ensure that AI-infused systems work for disabled people, we need to bring accessibility datasets sourced from this community in the development lifecycle. However, there are many ethical and privacy concerns limiting greater data inclusion, making such datasets not readily available. We present a pair of studies where 13 blind participants engage in data capturing activities and reflect with and without probing on various factors that influence their decision to share their data via an AI dataset. We see how different factors influence blind participants' willingness to share study data as they assess risk-benefit tradeoffs. The majority support sharing of their data to improve technology but also express concerns over commercial use, associated metadata, and the lack of transparency about the impact of their data. These insights have implications for the development of responsible practices for stewarding accessibility datasets, and can contribute to broader discussions in this area. CCS CONCEPTS• Human-centered computing → Human computer interaction (HCI); Accessibility; • Social and professional topics → People with disabilities; • Security and privacy → Human and societal aspects of security and privacy.

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Section: Related Workmentioning

confidence: 99%

Contributing to Accessibility Datasets: Reflections on Sharing Study Data by Blind People

Kamikubo

Lee

Kacorri

2023

Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems

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Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany

Richter

Borzikowsky

Lesch³

et al. 2020

Eur J Hum Genet

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Making routine clinical-care-data available for medical research requires adequate consent to legitimize use and exchange. While, public interest in supporting medical research is increasing, individuals often find it difficult to actively enable researchers to access their data. In addition to broad consent, the idea of (consent-free) data donation has been brought into play as another way to legitimize secondary research use of medial data. However, flanking the implementation of broad consent policies or data donation, the attitude of patients, and the general public toward different aspects of these approaches needs to be assessed. We conducted two empirical studies to this end among Dutch patients (n = 7430) and representative German citizens (n = 1006). Wide acceptance of broad consent was observed among Dutch patients (92.3%), corroborating previous findings among German patients (93.0%). Moreover, 28.8% of the Dutch patients generally approved secondary data-use for non-academic research, 42.3% would make their decision dependent upon the type of institution in question. In the German survey addressing the general population, 78.8% approved data donation without explicit consent as an alternative model of legitimization, the majority of those who approved (96.7%) would allow donated data to be used by universities and public research institutions. This willingness to support contrasted sharply with the fact that only 16.6% would allow access to the data by industry. Our findings thus not only add empirical evidence to the debate about broad consent and data donation, but also suggest that widespread public discussion and education about the role of industry in medical research is necessary in that context.

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Towards Designerly Data Donation

Ortega

Bourgeois

Kortuem

2021

Adjunct Proceedings of the 2021 ACM International Joint Conference on Pervasive and Ubiquitous Computing and Proceedings of The

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In-the-wild research allows the HCI community to gain insights into personal behaviour and characteristics. For designers and researchers, this means having access to rich spatiotemporal insights reflecting user's characteristics, behaviours, and needs. However, designerly contexts require contextualized and meaningful data, and collecting it in-the-wild involves a great effort. In addition, ethical implications need to be considered. In this paper, we propose designerly data donation, a participatory approach for data collection in-the-wild, as an effective and ethical way to enable data-centric design processes. We present the potential benefits of designerly data donation around three axes: value gain, data contextualization, and roles and relationships. And we introduce the challenges of designerly data donation at the intersection of HCI, UbiComp, and design. CCS CONCEPTS• Human-centered computing → HCI theory, concepts and models.

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Ethical Medical Data Donation: A Pressing Issue

Cited by 7 publications

References 6 publications

Contributing to Accessibility Datasets: Reflections on Sharing Study Data by Blind People

Contributing to Accessibility Datasets: Reflections on Sharing Study Data by Blind People

Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany

Towards Designerly Data Donation

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