Text (Instruction Step Text)
From The Embassy of Good Science
Describe the actions the user should take to experience the material (including preparation and follow up if any). Write in an active way.
- ⧼SA Foundation Data Type⧽: Text
1
[[File:AI Image9.png|center|frameless|600x600px]]
Antonija Mijatovic shares her thoughts on challenges for data privacy and security.
'''Challenges for data privacy and security'''
When it comes to data security and privacy, the major issues are data breaches. Because many applications in AI involve health data, and health data is sensitive and confidential by nature.
So, data breaches can lead to privacy violations, identity theft, even health risks. And they result in financial losses for healthcare organizations. Because healthcare is the top industry targeted by ransomware. Ransomware is a common cyber-attack. But aside of ransomware, data breaches can occur through hacking, phishing, and even if a device storing health information is lost or stolen. And data breaches can also happen unintentionally. For example, if patient data is emailed to the wrong recipient or posted online. And these incidents happen very often.
For example, in the United States alone, only in the last year there have been more than 500 cases of cyber-attacks. So, this is why it is important to address. Researchers need to take multiple measures to ensure data security and privacy. And these include cyber security measures, such as strong passwords, restricted access, two-factor authentication, and even encryption of very sensitive data. In addition, researchers should create backups of very important folders. And also, because 90% of cyber-attacks were allowed due to human error, researchers who work with sensitive data should receive proper training in the subject.
Ethics reviewers need to check whether researchers took all necessary measures to ensure data privacy and security. And they should also check whether researchers adhered to regulatory compliance. For example, in the European Union, personal data is regulated through the [https://gdpr.eu/what-is-gdpr/ GDPR] and personal data in AI is regulated through the [https://artificialintelligenceact.eu/ Artificial Intelligence Act]. While in the United States there are several guidelines such as the [https://aspe.hhs.gov/reports/health-insurance-portability-accountability-act-1996 Health Accountability and Portability Act].
[[File:Bio3Image10.png|center|frameless|600x600px]]
In addition to the guidelines discussed below, we have produced a checklist for RECs on the use of biobanking in research, attached at the end of this page. We hope that this will be useful for REC members considering proposals involving biobanking. Please also see the further resources section which includes the most relevant EU or international guidelines or standards related to biobanking, a bibliography and useful websites.
In Europe, biobanking is governed by regulations in the [https://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2004:102:0048:0058:en:PDF European Union's Clinical Trials Regulation and the Human Tissue and Cells Directive] which provides guidelines for sample collection, storage, and ethical considerations. Guideline 8 in [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9357355/ CIOMS International ethical guidelines for health-related research involving humans] sets out recommended practices for the collection, storage and use of biological materials and related data. Also relevant is the [https://www.isber.org/page/BPR General Data Protection Regulation] (GDPR), which addresses the processing of personal data.
[https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf The International Society for Biological and Environmental Repositories] (ISBER) provides guidelines for best practices, and the [https://www.oecd.org/health/biotech/guidelines-for-human-biobanks-and-genetic-research-databases.htm OECD's Guidelines on Human Biobanks and Genetic Research Databases] offer international recommendations. [https://doi.org/10.3390/genes15010066 Multiple national and regional regulations] further shape biobanking practices worldwide, emphasising ethical, legal, and privacy considerations.
It is important to remember that different guidelines and regulations will apply to biobanks and related research projects in order to comply with the requirements of different institutions, organisations and geographical locations. The further resources section lists and provides links to other relevant EU, African and other international guidelines or standards related to biobanking in health and healthcare, but you may need to explore further afield to locate those that apply to different situations.
[https://classroom.eneri.eu/sites/default/files/2024-11/Checklist%20for%20use%20of%20biobanking.pdf Checklist for RECS on the use of biobanking in research.]
[[File:Rep9.png|center|thumb|500x500px]]
Now we return to the research ethics committee perspective. Below is a hypothetical debate between members of a research ethics committee that is informed by the checklist about whether this VR study should be approved. The debate involves the following five characters:
*Dr Taylor (Chair of research ethics committee)
*Dr Evans (Bioethicist)
*Dr Brown (Psychologist)
*Dr Adams (Data privacy specialist)
*And Ms Amanda Lee (Lay member)
Did the research ethics committee discuss all of the issues you identified in the proposal? Did they miss anything important? They are clearly concerned about safeguarding participant wellbeing, privacy and data protection measures, but have they looked for fair participant recruitment or identified all risks and benefits, for example? +
[[File:Mm10.png|center|frameless|600x600px]]
The TRUST Code, a global code of conduct for equitable research partnerships, was designed to address ethics dumping. You can watch two videos here about the code: one gives an overview of the code, and one introduces its 23 articles. +
[[File:Consent spelled out on blocks.jpg|alt=consent spelled out on blocks|center|frameless|600x600px|consent spelled out on blocks]]
Informed consent is the cornerstone of ethical research with humans. It is of fundamental importance that people understand what a research project is about and provide their consent for taking part.
There are seven key ingredients for valid informed consent. Match the following ingredients to their meanings. +
[[File:Bio2Image11.png|center|frameless|600x600px]] +
Helicopter research occurs when researchers from affluent countries extract data or resources from lower-income regions without considering local needs or ethical concerns. A notable example occurred during the Ebola crisis in 2014. Researchers from high-income countries requested access to vast amounts of mobile phone data from Sierra Leone, Guinea, and Liberia to track population movements, claiming that it would provide significant insights into Ebola transmission.
The contrast between the handling of mobile phone data during the Ebola crisis and the German floods of 2021 underscores the double standards often present in helicopter research. +
[[File:Ext.Image11.png|center|frameless|600x600px]]
XR manipulation refers to the intentional alteration or distortion of reality within virtual environments. XR manipulation can alter users' perception of reality, create illusions or deceptions that trick users into perceiving virtual content as part of their physical environment. It can also be used to control the narrative within immersive experiences to shape their understanding, interpretation, and beliefs. The emergence of virtual beings, (for instance, avatars representing deceased individuals) introduces complex ethical questions regarding identity and agency.
Immersive technologies can also incorporate nudging techniques that are used to guide users' actions, shape their experiences, or promote certain outcomes. In the context of VR, ‘nudging’ refers to the application of certain measures to subtly influence the user’s decision-making. For instance, it may involve prompts, reminders, or visual cues; the presentation of options in specific ways; portraying particular behaviours as the social norm; or the offering of rewards or incentives. Given the intention to influence, the use of nudging techniques has ethical implications related to user autonomy and informed consent, so needs to be considered carefully.
While these facets can enhance immersion and entertainment value, they can also invoke ethical concerns related to transparency, consent, and user agency. XR manipulation can be exploited for malicious purposes, such as spreading misinformation, creating deceptive experiences, or manipulating users' behaviour for financial or political gain. Safeguards need to be implemented to prevent misuse of XR technologies and protect users from harmful manipulation. +
Changes to the process of seeking informed consent must not be allowed to compromise potential participants’ understanding of a research project. This includes ensuring that research participants do not mistake research for treatment (‘therapeutic misconception’), especially when healthcare staff rather than researchers seek consent +
Try to answer the questions about the case. +
From biological samples to precision medicine for patients. Virchows Arch. 2021 Aug;479(2):23Annaratone L, De Palma G, Bonizzi G, Sapino A, Botti G, Berrino E, Mannelli C, Arcella P, Di Martino S, Steffan A, Daidone MG, Canzonieri V, Parodi B, Paradiso AV, Barberis M, Marchiò C;Alleanza Contro il Cancro (ACC) Pathology and Biobanking Working Group (2021) Basic principles of biobanking:3-246. doi: 10.1007/s00428-021-03151-0. Epub 2021 Jul 13. PMID: 34255145;PMCID: PMC8275637.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8275637/
BBMRI-ERIC Common Service ELSI
https://www.bbmri-eric.eu/services/common-service-elsi/
European Commission (2018) Data protection in the EU
https://commission.europa.eu/law/law-topic/data-protection/data-protection-eu_en
Council of Europe (2016) Recommendation CM/Rec(2016)6 of the Committee of Ministers to member States on research on biological materials of human origin https://search.coe.int/cm/Pages/result_details.aspx?ObjectId=090000168064e8ff
Harati, M.D., Williams, R.R., Movassaghi, M., Hojat, A., Lucey, G.M., Yong, W.H. (2019). An Introduction to Starting a Biobank. In: Yong, W. (eds) Biobanking. Methods in Molecular Biology, vol 1897. Humana Press, New York, NY. https://doi.org/10.1007/978-1-4939-8935-5_2
Healthtalk.org What is biobanking and why is it important? https://healthtalk.org/experiences/biobanking/what-is-biobanking-and-why-is-it-important/
ISBER (International Society for Biological and Environmental Repositories) (2024) Best practices for repositories https://www.isber.org/page/BPR
NIH (2024) Genomic Data Sharing (GDS) Policy https://sharing.nih.gov/genomic-data-sharing-policy
OECD Guidelines for Human Biobanks and Genetic Research Databases (HBGRDs)
https://www.oecd.org/health/biotech/guidelines-for-human-biobanks-and-genetic-research-databases.htm
World Medical Association (2016) Declaration of Tapei on ethical considerations regarding health databases and biobanks
https://www.wma.net/policies-post/wma-declaration-of-taipei-on-ethical-considerations-regarding-health-databases-and-biobanks/
[[File:Gene Image11.png|center|frameless|600x600px]]
Gene editing technologies hold great promise for treating genetic diseases, improving agricultural yields, and addressing many other challenges. However, they also come with ethical, social, and safety considerations. Some of the risks associated with gene editing include:
'''Off-Target Effects '''
Gene editing tools may unintentionally modify genomic regions other than the target, leading to unintended consequences. Off-target effects could potentially cause new genetic mutations or disrupt the function of other essential genes.
'''On-Target Effects '''
Gene editing tools may unintentionally modify the target DNA in the wrong way with unwanted deletions or insertions. For instance, the DNA coding for the Cas protein may become built into the DNA target sequence of the cell, which would lead to the gene in question not functioning properly.
'''Mosaicism'''
Genetic mosaicism is the presence of more than one genotype in one individual. Some cells in the target region undergo the desired genetic modification while others still carry the original DNA resulting in a mosaic pattern of edited and unedited cells. This can lead to problems in communication between cells.
'''Immunogenicity'''
The use of gene editing tools, especially those involving viral vectors to deliver editing components, may trigger an immune response in the organism. The immune response could limit the effectiveness of the treatment or cause adverse reactions.
'''Germline Gene Editing'''
The ability to edit the human germline, which includes sperm and egg cells, raises ethical concerns about the potential for heritable genetic modifications. The long-term consequences and unintended effects on future generations are not fully understood;if the modifications turn out to be harmful, they will not only have consequences for a single individual, but also for future generations.
'''Unintended Consequences'''
Modifying one gene may have unintended consequences for other genes or biological processes. For instance, the unintended consequences of releasing GMOs into the environment, could result in gene flow to wild populations, disruption of ecosystems, and the emergence of resistant pests or weeds. Or the de-extinction of certain species could lead to other species becoming extinct or other disruptions of the ecosystem.
'''Human Enhancement'''
The ability to edit genes raises ethical questions about the potential for "designer babies," where genetic enhancements are made for non-medical reasons. This raises concerns about social inequality, discrimination, and the potential misuse of gene editing technologies.
[[File:GovProc7.png|center|frameless|600x600px]]
Preparing an application for the ethics approval of a research study can be a time-consuming process which is best approached methodically to ensure a coherent application with all required documentation. The process differs between institutions and organisations, but normally involves the following steps.
[[File:GovProc8.png|center|frameless|600x600px]]
Engagement with research ethics and integrity from the very start of a study helps researchers to design studies that are both ethical and of high quality.
Nevertheless, identifying and dealing with ethical issues is not just something that happens at the beginning of a study;ethics awareness is required throughout, as researchers sometimes find themselves dealing with unforeseen consequences and navigating uncharted territory. This is especially the case for research involving new technologies. Some fields, like artificial intelligence and extended reality, are developing rapidly and this requires ongoing assessment of challenges and ethics guidance as it becomes available. +
Varieties of goodness in research - a rotary style exercise (variation to original VIRT2UE exercise)) +
Each subgroup presents the results of the last round to the other groups.
The trainer thanks the participants for their work and the sharing of personal examples;recaps the lessons learnt and might refer to the objectives of the exercise that were presented at the start.
End with evaluation.
Depending on the agreements made prior to the training, the trainer might take a photo of each sheet and share these photo's with the participants so each can look back at the results. +
[[File:G13.png|center|frameless|600x600px]]
Bostrom, Nick, et Rebecca Roache. « Ethical issues in human enhancement ». In New Waves in Applied Ethics, édité par J. Ryberg, T. Petersen, et C. Wolf, 120--152. Palgrave-Macmillan, 2007. (https://www.darpa.mil/program/insect-allies).
Cohen, Y (2019) Did CRISPR help or harm the first-ever gene-edited babies? Science, 1st August [https://www.science.org/content/article/did-crispr-help-or-harm-first-ever-gene-edited-babies https://www.science.org/content/article/did-crispr-help-or-harm-first-ever-gene-edited-] [https://www.science.org/content/article/did-crispr-help-or-harm-first-ever-gene-edited-babies babies]
Kleiderman, Erika, et Ubaka Ogbogu. « Realigning gene editing with clinical research ethics: What the “CRISPR Twins” debacle means for Chinese and international research ethics governance ». Accountability in Research 26 (9 mai 2019): 257-64. https://doi.org/10.1080/08989621.2019.1617138.
Palazzani, Laura. « Gene-Editing: Ethical and Legal Challenges ». Medicina e Morale 72, no 1 (11 avril 2023): 49-57. https://doi.org/10.4081/mem.2023.1227.
Singh SM. Lulu and Nana open Pandora's box far beyond Louise Brown. CMAJ. 2019 Jun 10;191(23):E642-E643. doi: 10.1503/cmaj.71979. PMID: 31182462;PMCID: PMC6565397.
1 AUG 2019
Smyth, Stuart J., Diego M. Macall, Peter W. B. Phillips, et Jeremy de Beer. « Implications of Biological Information Digitization: Access and Benefit Sharing of Plant Genetic Resources ». The Journal of World Intellectual Property 23, no 3-4 (2020): 267-87. https://doi.org/10.1111/jwip.12151.
The Lancet. « Human Genome Editing: Ensuring Responsible Research ». The Lancet 401, no 10380 (mars 2023): 877. https://doi.org/10.1016/S0140-6736(23)00560-3.
Wei, X., & Nielsen, R. (2019). CCR5-∆ 32 is deleterious in the homozygous state in humans. Nature medicine, 25(6), 909-910.
https://www.nature.com/articles/s41591-019-0459-6 +
[[File:Ge3Image9.png|center|frameless|600x600px]]
This checklist is intended for use as a supplement to the usual ethics review process regarding matters that are mainly specific to the use of gene drive technology in research. All usual aspects of research ethics review will also need to be considered, for instance, compliance with national and international regulations and the appropriate health and safety measures. Additionally, the checklist is not exhaustive;there may be other issues pertaining to individual studies that are not included here. Nevertheless, alongside general guidelines and processes, it provides a useful starting point for ethics reviewers.
Environmental impacts
# Do the project activities risk ecosystem disruption?
# Has a thorough environmental impact assessment has been conducted, including for the potential effects on biodiversity, ecosystems, and food chains?
# If yes, what does this tell us?
# If no, are there plans to conduct this before any release of the gene drive?
# Do the researchers have a reasonable plan to monitor and manage unintended ecological consequences?
# How have the researchers taken account of the possibility of irreversible ecological changes?
# What safeguards are in place to protect biodiversity?
# Have the researchers paid due attention to the broader, global implications of releasing the gene drive?
# How will the technology be responsibly managed if it extends beyond the target regions?
Human health and wellbeing
# Are there risks to human health and wellbeing?
# If so, are appropriate measures in place to minimise harm to local populations (e.g., healthcare support, disease monitoring).
# Are appropriate measures in place for delivering health benefits to the local populations?
# Is there an appropriate plan for long-term monitoring of human health impacts?
Technological and other risks
# Do the researchers have an appropriate plan to monitor and manage unintended evolutionary consequences?
# Have the risks of gene flow to non-target species (e.g., through hybridization) been properly assessed and are appropriate precautions are in place?
# Is there an appropriate strategy to monitor and respond to evolutionary resistance, including adjustments to the gene drive or alternative interventions if resistance develops?
# Do the researchers have an appropriate contingency plan for halting or reversing the gene drive if negative effects are observed (for instance, gene drive off switches, or self-limiting mechanisms)?
Community involvement
# Have the local community been meaningfully involved in decision-making processes related to the project design and implementation?
# How is the consent process being managed?
# How will it be ensured that all those affected (including individuals, groups, and local leaders) understand the potential risks and benefits fully?
# How is the option to opt out of the study managed?
Equity
# Is the research to be situated in a low or lower-middle income country?
# If so, how are the researchers taking steps to avoid ethics dumping?
# Who are the potential beneficiaries of this study?
# Will the resultant benefits be accessible to the local populations?
# Has a plan for equitable sharing of the benefits arising from the research been agreed with the local communities?
# Will the local population have the capacity and resources to manage and monitor the technology after the research phase concludes, ensuring local control over future developments?
Study justification
# Is there a justifiable need for this study?
# Might the same objectives be achieved via less risky and/or less costly methods?
[[File:M10.png|center|frameless|600x600px]]
While many research ethics codes and guidelines have something to say about the inclusion of vulnerable people in research, in general they promote the same two messages: first, that most vulnerabilities are associated with voluntariness, and second, that certain groups should be awarded more protection than others.
When vulnerability is mentioned in research ethics codes, it is primarily in relation to the ability to provide informed consent. This can be associated with innate characteristics (for instance, young children or adults with severe cognitive dysfunctions). It can also be associated with circumstances that might impact upon the voluntariness of their consent (for instance, with prisoners or employees).
Some codes also mention risk-based vulnerabilities whereby vulnerability stems from being at an increased risk of mental or physical harm (for instance, pregnant women).
'''Exercise Feedback'''
The Australian National Statement (2023, p12) provides an extensive list of the sorts of harm to which research participants might be vulnerable including:
*physical harm: including injury, illness, pain or death;*psychological harm: including feelings of worthlessness, distress, guilt, anger, fear or anxiety related, for example, to disclosure of sensitive information, an experience of re-traumatisation, or learning about a genetic possibility of developing an untreatable disease;*devaluation of personal worth: including being humiliated, manipulated or in other ways treated disrespectfully or unjustly;*cultural harm: including misunderstanding, misrepresenting or misappropriating cultural beliefs, customs or practices;*social harm: including damage to social networks or relationships with others, discrimination in access to benefits, services, employment or insurance, social stigmatization, and unauthorized disclosure of personal information;*economic harm: including the imposition of direct or indirect costs on participants;*legal harm: including discovery and prosecution of criminal conduct.
There are different rules surrounding copyright law for texts and images. Make sure that you have all the necessary rights and permissions in place before you publish.
==== Licensing of your material ====
Any material you create and share with others can be licensed. The license is a message to the reader, or the user of the material, about how they can use or reuse the content.
All material that you produce as a researcher, such as articles, book chapters, books, blog texts, working papers, conference papers or teaching material, can be licensed at the time of publication. The license should be visible on the title page or first page of the material you publish.
==== Copyright ====
Copyright refers to the intellectual property of a work that has been made public by you or your organisation. Copyright law is different in each country, and there is no international law that can be applied overall. However, certain principles apply globally. The right to be recognised as the creator is intrinsic. This means that you, as the author and/or publisher of the material, own the right to decide how it will be used. Different terms apply depending on how copyright is managed by the publisher, and there is sometimes a charge applied for someone who wants to reproduce or share copyrighted material.
Copyright is divided into two parts:
* The ‘intellectual rights’ that are non-transferrable, meaning that you, as the creator of a work, always have to be recognised.
* The economic rights that can, however, be transferred to a publisher or licensed for reuse.
For academic purposes, it is common practice to allow works to be cited to a certain limit (usually about 250 words or 1–2 images or tables, as long as the original source is clearly stated). This can be referred to as “fair use”, “fair dealing”, or “citation rights” depending on which national law applies to the published material.
==== Academic articles ====
The author of a journal article may, as part of a standard contract with the publisher, have limited rights to share their own work or may have signed away their economic rights entirely. Many publishers still allow articles to be made freely available provided that certain conditions are met. If you want to know what applies to the journal where you have published your articles, please visit the journal’s publisher’s policy in [https://v2.sherpa.ac.uk/romeo/ SHERPA/RoMEO]. Authors are recommended to check that the publisher’s policy aligns with the policy of their institution and funder before signing any contracts.
==== Books and book chapters ====
When publishing a book, or a chapter in a book, the terms of licensing and copyright will typically be included in a contract which you would have to agree with a publisher and which will specify the usage rights, the format(s) and length of time applied to the work.
Book contracts vary from publisher to publisher, and can in some cases be complicated. If you are required to sign a contract with a publisher in order to publish your work you need to ensure that the contract covers your rights and that it takes into account the obligation you have to your employer and/or the funder of your research.
If you want to publish a thesis or dissertation it is recommended that you contact your institution or department to make sure that you follow their policy for such publications.
For more information on what to consider before publishing an Open Access book see the [https://oabooks-toolkit.org/lifecycle/3284351-book-contract-and-license/article/4492720-contracting-and-copyright Open Access Books Toolkit].
==== Images and copyright ====
Artistic works, photographs, illustrations and diagrams have copyright protection specifying the use by someone without the author’s explicit permission. This protection is governed by the law of copyright for literary and artistic works in the country where your work is published. It is important that you consult the rightsholder if you would like to reproduce work from other sources in your book or article, unless the original work is openly licensed for reuse.
Should you not get permission to use a picture in its electronic format, you can omit it and replace it with an explanatory text: “Because of copyright protection, this picture is missing in its electronic (or print) format.”
Further reading:
FOSTER. https://open-science-training-handbook.github.io/Open-Science-Training-Handbook_EN//02OpenScienceBasics/06OpenLicensingAndFileFormats.html
[1] Think. Check. Submit. (2024). Copyright and Licensing for authors and editors. https://thinkchecksubmit.org/resources/copyright-and-licensing/
Practice the multiple choice questions. +
In 2016, the ‘FAIR Guiding Principles for scientific data management and stewardship’ were published in Scientific Data. The authors intended to provide guidelines to improve the Findability, Accessibility, Interoperability, and Reuse of digital assets.
The principles emphasise machine-actionability (i.e., the capacity of computational systems to find, access, interoperate, and reuse data with none or minimal human intervention) because humans increasingly rely on computational support to deal with data as a result of the increase in volume, complexity, and creation speed of data.
====What is FAIR data?====
The FAIR principles describe how research outputs should be organised so they can be more easily accessed, understood, exchanged and reused. Major funding bodies, including the European Commission, promote FAIR data to maximise the integrity and impact of their research investment.
The principles refer to three types of entities: data (or any digital object), metadata (information about that digital object), and infrastructure.
FAIR principles enable researchers to maximize the value of their data, accelerating scientific progress and innovation. FAIR data is an important aspect of the Open Science policy of the European Commission.
====The FAIR guiding principles====
'''Findable'''
The first step in (re)using data is to find them. Metadata and data should be easy to find for both humans and computers. Machine-readable metadata are essential for automatic discovery of datasets and services, so this is an essential component of the [https://www.go-fair.org/fair-principles/fairification-process/ FAIRification process].
F1. (meta)data are assigned a globally unique and eternally persistent identifier.
F2. data are described with rich metadata.
F3. (meta)data are registered or indexed in a searchable resource.
F4. metadata specify the data identifier.
=====Accessible=====
Once the user finds the required data, she/he/they need to know how they can be accessed, possibly including authentication and authorisation.
A1. (meta)data are retrievable by their identifier using a standardized communications protocol.
*A1.1. the protocol is open, free, and universally implementable.
*A1.2. the protocol allows for an authentication and authorization procedure, where necessary.
A2. metadata are accessible, even when the data are no longer available.
=====Interoperable=====
The data usually need to be integrated with other data. In addition, the data need to interoperate with applications or workflows for analysis, storage, and processing.
I1. (meta)data use a formal, accessible, shared, and broadly applicable language for knowledge representation.
I2. (meta)data use vocabularies that follow FAIR principles.
I3. (meta)data include qualified references to other (meta)data.
=====Reusable=====
The ultimate goal of FAIR is to optimise the reuse of data. To achieve this, metadata and data should be well-described so that they can be replicated and/or combined in different settings.
R1. meta(data) have a plurality of accurate and relevant attributes.
*R1.1. (meta)data are released with a clear and accessible data usage license.
*R1.2. (meta)data are associated with their provenance.
*R1.3. (meta)data meet domain-relevant community standards.
[1] GO FAIR. FAIR principles. https://www.go-fair.org/fair-principles/
[2] Wilkinson, M. D., Dumontier, M., Aalbersberg, I. J., Appleton, G., Axton, M., Baak, A., Blomberg, N., Boiten, J. W., da Silva Santos, L. B., Bourne, P. E., Bouwman, J., Brookes, A. J., Clark, T., Crosas, M., Dillo, I., Dumon, O., Edmunds, S., Evelo, C. T., Finkers, R., Gonzalez-Beltran, A., … Mons, B. (2016). The FAIR Guiding Principles for scientific data management and stewardship. Scientific data, 3, 160018. https://doi.org/10.1038/sdata.2016.18<div></div>
