Data Matters Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop (2018) / Chapter Skim
Currently Skimming:
2 Privacy, Security, and Confidentiality of Data Sharing and Storage
2 Privacy, Security, and Confidentiality of Data Sharing and Storage
Pages 17-46
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 17... ...
Then, Kristin Tolle, Director of the Data Science Initiative at Microsoft Research Outreach, Brad Fenwick, Senior Vice President of Global Strategic Alliances at Elsevier, 17
|
From page 18... ...
One effect of this distinction is that if a consumer wants to revoke the consent they may have given, they must contact the controller to initiate that request, and the controller must go to the processor, who must act in good faith to remove those data from its database. GDPR, said Draghia, was developed to serve as a harmonized and simplified framework for data protection to replace the patchwork of rules, regulations, and laws that had proliferated in the European Union.
|
From page 19... ...
At the same time, consent for research can be for relatively broad content for specific areas of research, such as consent to use a patient's tissue sample for all types of brain cancer, not just glioblastoma multiforme. GDPR does contain a provision that further conditions, including limitations, might be included by member states regarding the processing of genetic, biometric, or health data, though the European Commission has created working groups to harmonize national laws.
|
From page 20... ...
To replace safe harbor provisions, some companies are using Privacy Shield,1 two self-certification frameworks designed by the U.S. Department of Commerce and the European Commission and Swiss Administration to provide companies on both sides of the Atlantic with a mechanism to comply with data protection requirements when transferring personal data from the European Union and Switzerland to the United States.
|
From page 21... ...
Together, said Feamster, that information can tell the phone's operating system exactly what store a user is passing by at any given moment. Similarly, internet service providers and some virtual private networks are also collecting information in a drive to become players in the advertising space.
|
From page 22... ...
He also commented on developments in which artificial intelligence and machine learning methodology could be used to mine data to predict health-related incidents such as a person with bipolar disorder starting to have a manic episode based on data usage or a person displaying suicidal behavior based on online postings on social media. Deciding who gets that information and whether intervening is ethical or not is an open question, he said, but one that needs an answer.
|
From page 23... ...
More importantly, data give research validity, and the expectation that the underlying data supporting a publication should be available is going international. There is an increased expectation from funders, he said, to make data more transparent for reproducibility purposes, just as there is an increased expectation that data should be available so that society can reap the economic gains that come from using data that are often produced using public funds.
|
From page 24... ...
It was also noted that cryptographic techniques such as blockchain do nothing to prevent publication of bad or false data, but only serve to protect the integrity of data once they are published. DOMAIN-SPECIFIC EXAMPLES The second panel session of the day provided a diverse set of domain-specific examples of how ethics and data issues play out in international research collaborations.
|
From page 25... ...
The growth of artificial intelligence and machine learning has the potential to create an additional data security issue. To explain, Pelton said that digital algorithms using artificial intelligence will be used to preprocess enormous amounts of data before the data get to the researcher.
|
From page 26... ...
Perakslis described four projects related to developing data management systems and platforms with varying degrees of privacy and security concerns. The first project was tranSMART, an open-source knowledge management and data analytics platform, which uses open-source software to put the company's preclinical and clinical trials data into the cloud and integrate those data across therapeutic regimes and stages of drug development.
|
From page 27... ...
. AGU has also been involved in creating the Coalition on Publishing Data in the Earth and Space Sciences, which issued a statement on behalf of every Earth and space science publisher and data repository committing them to making data transparent, open, and protected.
|
From page 28... ...
Stall explained that although AGU is acting as a convener for this work, the solutions have been community driven and build on previous work done by the Coalition for Publishing Data in the Earth and Space Sciences. She also pointed out that the data associated with all publications will be open by default.
|
From page 29... ...
SOURCE: From presentation by Jim Shultz on disasters and the ethics of data usage in international research collaborations on March 15, 2018.
|
From page 30... ...
30 FIGURE 2-2 The small island developing states. SOURCE: From presentation by Jim Shultz on disasters and the ethics of data usage in international research collaborations on March 15, 2018.
|
From page 31... ...
Understanding all these consequences, from the physical devastation to the psychological and social toll, requires putting together many different data elements compiled by multiple disciplines, said Shultz.
|
From page 32... ...
32 FIGURE 2-4 Data elements needed for understanding the risks and public health consequences from hurricanes. SOURCE: From presentation by Jim Shultz on disasters and the ethics of data usage in international research collaborations on March 15, 2018.
|
From page 33... ...
As an example, she noted that the National Center for Health Statistics is using what is called the Five Safes framework, which breaks down the decisions surrounding data access and use into five related but separate dimensions: safe projects, safe people, safe data, safe settings, and safe outputs.3 The safe projects domain asks whether the specific use of the data is appropriate, lawful, ethical, and sensible. The safe people domain examines whether the researchers can be trusted to use the data in an appropriate manner.
|
From page 34... ...
Highly restricted data, she explained, include data collected by the Census Bureau, tax data, and other statistical data collected under a pledge of confidentiality according to the Confidential Information Protection and Statistical Efficiency Act of 2002. This law includes many legal restrictions on how such data can be shared, and it requires a proposal, a background check, and being sworn in as a special agent, Potok explained.
|
From page 35... ...
One advantage Earth and space science projects have in this realm, because they generated enormous data sets by their very nature, is that their data management aspects are well funded. She is concerned, though, about studies that are generating smaller data sets, that include multiple-data-type datasets, and that may not have the resources to engage in good data management practices.
|
From page 36... ...
SHARING RESPONSIBLY: DATA ETHICS IN PRACTICE Data are foundational to contemporary science, and there are many legal, regulatory, and methodological challenges to using data that the previous speakers had described. The most important challenges, argued Madeleine Murtagh, professor of sociology and bioethics at Newcastle University, are those associated with the people who generate and use data.
|
From page 37... ...
"When we are talking about data, we are often talking about individual data, but we are also, as we have heard at this meeting, talking about communities and populations and the impact is more broad than simply at the level of the individual," said Murtagh. In the context of responsible sharing of genomic and health-related data, these rights translate into the principle that advancing science is an ethical contract that researchers have signed, and they lead to the core elements for responsible data sharing, which include transparency; accountability; data quality and security; privacy, data protection, and confidentiality; risk-benefit analysis; recognition and attribution; education and training; and accessibility and dissemination.
|
From page 38... ...
program that looks at data access for multiple studies. METADAC is an independent body for granting access to longitudinal research projects in the United Kingdom that use phenotypic and genotypic data and associated sample collection.
|
From page 39... ...
But even more so, we want to go upstream so that we are creating trustworthy technologies and infrastructures for data that people are happy with, and one of the ways you do that is to co-produce it with them." She describes this as a sociotechnical approach to data governance, data ethics, and making data more usable. "Sharing data responsibly is not simply made up of, but I would argue absolutely requires, interdisciplinarity, intersectionality, public engagement, and entanglements, and even if they are sometimes thorny entanglements, we still need them," said Murtagh.
|
From page 40... ...
"You can see that the issue of just collecting data is influenced by many other factors that will expand the scope of the ethical analysis if you want to include them, and it is important to do so when it comes to the developing countries in Africa," said Mbow. Science, however, is not only created using data, he said.
|
From page 41... ...
In his opinion, it is important not just to fund data collection, but to create connections between the funder, the national government, and the local communities that will serve as the data source. Such connections are vital, he said, to ensure that data are benefiting those communities and enabling them to innovate for their own good.
|
From page 42... ...
"There are many solutions we can envision when we talk about data and ethics in that perspective," said Mbow. I hope that some of them will be implemented with unrelenting diligence." Perspectives on Data, Cities, and Resilience Sister Cities International, explained Roger-Mark De Souza, focuses on matching cities, states, and counties looking for areas of commonality that will serve as a basis for engaging what the organization calls citizen diplomats.
|
From page 43... ...
Since then, he added, hundreds of local leaders have committed to supporting these sustainable development goals in their cities. Sister Cities fits into this effort through its ability, demonstrated over its 62-year history, to bring together people from different countries in an atmosphere of mutual respect, understanding, and cooperation.
|
From page 44... ...
Responding to a question from a workshop participant, De Souza acknowledged that there is an opportunity for Sister Cities to license their data to commercial users so that resulting data remain open to other users and the public. He also noted that there are some ethical questions around overlaying information from
|
From page 45... ...
Other projects, such as a mapping project in Madagascar, put elderly women together with young people to lead participatory research that men never thought to do. A workshop participant commented on the opportunity that START and Sister Cities has to study the programs in which they are engaged to develop lessons learned and best practices that others can then use to design more effective programs that engage communities around data and develop ethical frameworks for sharing and using data.
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.