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RDA COVID-19: Vulnerable groups

  • Creator
    Discussion
  • #104141

    Dear All,
    I appreciate this may be too late for this release – apologies. But here is the text requested from Anne on vulnerable groups which would be 10.4.8 (i.e., after the 4 Safes section). Our only mitigation: I have included the links and checked they resolve to where they should do.
    I have added in the references to Zotero; and added a tag (sorry) “*new” so that they can be identified if they are not to be included in this release.
    Brian
    And here is the raw text (in addition to the Gdoc linked above)
    10.4.8 Vulnerable Groups
    The overall motivation in producing these guidelines and recommendations has emphasised the open and timely sharing of research data. There is an important consideration, however, when dealing with groups and not just individual participants. Vulnerable groups may include ethnic minorities like Roma or Sinti, or others such as children or those with mental or physical disabilities. As well as the indigenous populations discussed in Chapter 8 above, such groups should be given additional consideration in terms of licensing as well as the collecting, processing and sharing of data (Taylor et al., 2017). Although a general recommendation would be to use a permissive licence (such as CC 0 mentioned in Section 10.4.6 above), it is important to remember that licences are not aimed at protecting the rights and expectations of individuals or groups represented in the data. For instance, advanced data analytic techniques may identify previously de-identified individuals themselves (Zheng et al, 2011; Bedagkar-Gala & Shah, 2014), or groupings among individual parties in the dataset which they were unaware of (Cathy O’Neil, 2016; see also boyd & Crawford, 2012). This could lead to stigmatisation and marginalisation (van Aasche et al, 2013). Therefore, when choosing a licence or when reviewing the ethical implications of sharing data, it is important to consider vulnerable groups and ensure their interests are respected. This of necessity includes data which are not typically thought of as personal data. For example, identifying rare vegetation or animals associated with an indigenous group may help pinpoint their location and therefore expose them to risk.

  • Author
    Replies
  • #129792

    Thanks, Brian. I’ll incorporate this now. Can you confirm whether the resources added to Zotero were tagged as “*CITEDresource”?
    Best regards,
    Mary
    Mary O’Brien Uhlmansiek, MA
    Director, Implementation & Outreach
    Research Data Alliance – US/RNA
    https://www.rd-alliance.org
    ORCID: 0000-0002-7949-2057
    Skype: Mary Uhlmansiek
    From: on behalf of JBrianP via RDA COVID19 Coordination
    Reply-To: “***@***.***
    Date: Wednesday, May 27, 2020 at 2:22 PM
    To: “***@***.***-groups.org
    Cc: Anne Cambon-Thomsen , Alexander Bernier
    Subject: [rdacovid19-coordination] RDA COVID-19: Vulnerable groups
    Dear All,
    I appreciate this may be too late for this release – apologies. But here is the text requested from Anne on vulnerable groups which would be 10.4.8 (i.e., after the 4 Safes section). Our only mitigation: I have included the links and checked they resolve to where they should do.
    I have added in the references to Zotero; and added a tag (sorry) “*new” so that they can be identified if they are not to be included in this release.
    Brian
    And here is the raw text (in addition to the Gdoc linked above)
    10.4.8 Vulnerable Groups
    The overall motivation in producing these guidelines and recommendations has emphasised the open and timely sharing of research data. There is an important consideration, however, when dealing with groups and not just individual participants. Vulnerable groups may include ethnic minorities like Roma or Sinti, or others such as children or those with mental or physical disabilities. As well as the indigenous populations discussed in Chapter 8 above, such groups should be given additional consideration in terms of licensing as well as the collecting, processing and sharing of data (Taylor et al., 2017). Although a general recommendation would be to use a permissive licence (such as CC 0 mentioned in Section 10.4.6 above), it is important to remember that licences are not aimed at protecting the rights and expectations of individuals or groups represented in the data. For instance, advanced data analytic techniques may identify previously de-identified individuals themselves (Zheng et al, 2011; Bedagkar-Gala & Shah, 2014), or groupings among individual parties in the dataset which they were unaware of (Cathy O’Neil, 2016; see also boyd & Crawford, 2012). This could lead to stigmatisation and marginalisation (van Aasche et al, 2013). Therefore, when choosing a licence or when reviewing the ethical implications of sharing data, it is important to consider vulnerable groups and ensure their interests are respected. This of necessity includes data which are not typically thought of as personal data. For example, identifying rare vegetation or animals associated with an indigenous group may help pinpoint their location and therefore expose them to risk.

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  • #129790

    It’s not necessary to use a tag, *new.
    Resources/references selected with the tag, *CITEDresources, can be sorted by “Date Added” (see middle panel) to find all the new ones.
    Is it ok with everyone if we remove the tag, *new?
    Cheers,
    Claire
    ________________________________
    From: ***@***.***-groups.org on behalf of JBrianP via RDA COVID19 Coordination
    Sent: May 27, 2020 3:22 PM
    To: ***@***.***-groups.org
    Cc: Anne Cambon-Thomsen ; Alexander Bernier
    Subject: [rdacovid19-coordination] RDA COVID-19: Vulnerable groups
    Dear All,
    I appreciate this may be too late for this release – apologies. But here is the text requested from Anne on vulnerable groups which would be 10.4.8 (i.e., after the 4 Safes section). Our only mitigation: I have included the links and checked they resolve to where they should do.
    I have added in the references to Zotero; and added a tag (sorry) “*new” so that they can be identified if they are not to be included in this release.
    Brian
    And here is the raw text (in addition to the Gdoc linked above)
    10.4.8 Vulnerable Groups
    The overall motivation in producing these guidelines and recommendations has emphasised the open and timely sharing of research data. There is an important consideration, however, when dealing with groups and not just individual participants. Vulnerable groups may include ethnic minorities like Roma or Sinti, or others such as children or those with mental or physical disabilities. As well as the indigenous populations discussed in Chapter 8 above, such groups should be given additional consideration in terms of licensing as well as the collecting, processing and sharing of data (Taylor et al., 2017). Although a general recommendation would be to use a permissive licence (such as CC 0 mentioned in Section 10.4.6 above), it is important to remember that licences are not aimed at protecting the rights and expectations of individuals or groups represented in the data. For instance, advanced data analytic techniques may identify previously de-identified individuals themselves (Zheng et al, 2011; Bedagkar-Gala & Shah, 2014), or groupings among individual parties in the dataset which they were unaware of (Cathy O’Neil, 2016; see also boyd & Crawford, 2012). This could lead to stigmatisation and marginalisation (van Aasche et al, 2013). Therefore, when choosing a licence or when reviewing the ethical implications of sharing data, it is important to consider vulnerable groups and ensure their interests are respected. This of necessity includes data which are not typically thought of as personal data. For example, identifying rare vegetation or animals associated with an indigenous group may help pinpoint their location and therefore expose them to risk.

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