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
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The term Slippery Slope is an argument that claims that an initial action will trigger a series of other events that will lead to basically some undesirable outcomes in the end. So, if we decide to allow
a procedure that heals cystic fibrosis in patients, for example. The argument claims that this will lead to
more controversial procedures, such as basically, for example, editing cells in terms of, let's say, growth, editing the height of people, and this will then lead to enhancements such as choosing the eye colour of people or other very controversial procedures.
The problem with human enhancement is that there is no consent, because human enhancement needs to be done before the birth of a baby. So, there's no consent from the baby, obviously. So, we would need to ask the parents. And that could be a problem, because the parents' intentions might not be aligned with the baby's intentions.
There's also the problem of accessibility, because obviously if people have to pay for it, then it would be accessible for rich people, but not for poorer ones. And that also leads to a problem of fairness.
And it could lead to a two-class system where rich people have access to enhancement, whereas poorer people don't have access. And that would be a problem for society as well. +
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Alexei Grinbaum shares his thoughts on reasons to be cautious about AI.
'''Reasons to be cautious about the use of AI'''
Like with all artificial intelligence systems, there should be limits, filters, and controls. We shouldn't just let it go uncontrolled completely. So unchecked completely. First, of course, there is the classic question of data, personal data, sensitive data. This is about health, our data. Some of it is genetic. Some of it lets us identify people. How do we treat that data? So, that is a very classic question. But beyond that, there are very interesting questions about human autonomy. AI systems, will they overtake the doctors? Will they still leave a place for human contact, human warmth?
If we seek advice from an AI system, does it mean that somehow the medical profession is changing completely? So, these kinds of questions are important. Again, they're not exactly specific to the medical sphere. They also exist, for example, for AI assistance. But in the medical sphere, there are interesting questions that are a little bit more specific. Some would say, cybersecurity, you know, it's everywhere. We have all heard about robustness and cybersecurity. But in the medical sphere, if you have a device that is interacting with your body, and if somebody can hack it, well then of course, it's a direct threat to our well-being, to our health. So, the questions of cybersecurity are also very touchy, I would say, in the medical sphere.
And then beyond that, we have classic big questions about organisations. Will the whole sphere of medical care with the hospitals, you know, the emergency rooms and all of these things, how will that evolve? Should it be managed not by humans, but by robots or AI systems? Will they respond faster? How will that change the way we build our social institutions? And that's another dimension of AI in health care.
So, there are definitely benefits at each of these levels. But there are also risks, or I would say, reasons to be cautious, reasons not to go too fast with the deployment of AI systems, because the human profession doesn't change in 10 days, right? We need time to evolve. We need time to learn new skills.
So not going too fast, teaching medical doctors and healthcare professionals to work together with these systems rather than be replaced by these systems. That is something that is very important. Take time. Take the time. Be cautious about bias, discrimination, accessibility, autonomy, control, all of those different things, and not go too fast.
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Which consent model would you recommend to be used by the XYZ/ABC partnership? Please select one answer from the choices below and then click to reveal how others have voted.
'''Feedback'''
For this COVID-19 study, broad consent might be appropriate if combined with strong safeguards for participant rights and mechanisms for withdrawal. However, if participant autonomy is a priority, especially given the cultural diversity between Country X and Country Y, dynamic consent may be the ideal model, despite its logistical challenges. Study-specific consent could also be ethically valid for this particular study, though it may limit future research potential. +
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'''Cybersecurity'''
# Does the XR device/technique include protection mechanisms against adversarial attacks (exploiting system vulnerabilities) or hacking?
# Are robust data security measures, such as encryption, implemented to protect stored data from unauthorized access or breaches?
# Is the XR device susceptible to misuse or diversion? Is misuse plausible?
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As you can see from the above exercise, the inclusion of XR in a research project can raise a broad and complex range of ethical issues that require attention from the research ethics committee for a variety of purposes. Some of the items on the checklist are relevant to assessment of the potential harms and benefits, some to the assessment of legal compliance and so on. The research ethics committee have a lot of factors to consider. Use of the document The use of XR technologies in research: A checklist for research ethics committees will help them spot these factors so that they can fulfil all aspects of their role effectively.
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*<span lang="EN-US">Return to the icebreaker activity or learning goals (mind mapping or Mentimeter results) and ask participants if their expectations were met.</span>
*<span lang="EN-US">Share a QR code linking to the evaluation form and online modules for continued learning.</span>
*<span lang="EN-US">Thank participants for their contributions and encourage them to apply their insights in their work and spread the word about the irecs modules.</span>
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Split up the group (if more than 10 people attend) in smaller groups. For this session you can pick among the following activities. Each of these activities have been presented in a separate module and applied to a specific topic. You can use these instructions as a guide and adapt the format to your training topic.
· Case study
· Mind mapping
<span lang="EN-US">· [https://embassy.science/wiki-wiki/index.php/Instruction:1d832939-90e0-4879-a557-e60627c0555e Role play]</span>
<span lang="EN-US">· </span>Think out lound
At the end of the group work facilitate a plenary reflection, reporting back and harvesting results of subgroups’ discussion. +
*<span lang="EN-US">Return to the icebreaker activity or learning goals (mind mapping or Mentimeter results) and ask participants if their expectations were met.</span>
*
*
*<span lang="EN-US">Share a QR code linking to the evaluation form and online modules for continued learning.</span>
*
*<span lang="EN-US">Thank participants for their contributions and encourage them to apply their insights in their work and spread the word about the irecs modules.</span>
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During the COVID pandemic, a London-based programme was the first in the world to intentionally expose 36 healthy volunteers to the SARS-CoV-2 virus, 18 of whom developed the infection. The participants spent two weeks in strict isolation, their only in-person contact being medical staff.
This video features quotes from interviews with volunteers from both SARS-CoV-2 and Zika virus human challenge trials. Their primary motivation for joining these studies was a desire to contribute to scientific research and potentially help others. +
[[File:Words written on the screen.jpg|alt=words written on the screen|center|frameless|600x600px|words written on the screen]]
Some ethical issues are common across research disciplines. For instance, all researchers who work with human participants need to think about informed consent and privacy, regardless of their research discipline. Other ethical challenges are more specific to certain research fields. For instance, ethical challenges associated with research in artificial intelligence can be quite different to those involving animal experimentation or archaeology.
Watch the following presentations to hear about some of the challenges facing a nuclear physicist, an animal physiologist, and a historian. +
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For each of the following characteristics, decide whether it relates to somatic gene editing or germline gene editing.
The key distinction between somatic gene editing and germline gene editing lies in the target cells and the heritability of the genetic modifications. Somatic gene editing involves making changes to the DNA of somatic cells, which are the non-reproductive cells of an organism.
Germline gene editing involves making changes to the DNA of germline cells, which are the cells that give rise to eggs and sperm.
Germline gene editing has the potential to address genetic diseases at the root level by correcting or eliminating the underlying genetic mutations in the germline. However, the use of germline gene editing is a topic of ongoing ethical and scientific debate due to concerns about safety, unintended consequences, and the potential for ‘designer babies.’ +
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'''The right to withdraw consent'''
The right to withdraw consent is a fundamental aspect of ethical research. While the motives behind withdrawal can differ greatly, operationalising withdrawal of consent remains complex, particularly if biobank data or samples have already been used in research. The withdrawal of consent should be documented, and samples and data should be destroyed safely or returned to the donor.
'''The death of a donor'''
The death of a donor can create ambiguity in terms of ongoing consent for the use of their samples. Guidelines differ globally: some suggest that consent should be presumed to continue after death, others advocate for re-consenting by next of kin.
'''The use of samples without consent'''
The use of samples without consent, often in the case of historical or residual samples, is another complex issue for consent, as well as for data sharing and privacy issues. In this case, decision-making about the use of samples involves balancing donor interests with the potential scientific value of such samples.
'''Respecting cultural norms and practices'''
Respecting cultural norms and practices, as in any research study, researchers and RECs should bear in mind the need to respect cultural norms when seeking informed consent from an individual. For instance, in some cultures it is expected that the head of a household or community elders would be asked to provide their consent for a member of the family/community participating in a research study or donating biospecimens and health-related data to a biobank. +
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Did we mention all of the potential risks and benefits that you noted? It’s actually very difficult to capture them all when thinking about a new technology that is to be used in a novel manner. There is always the chance of unforeseen impacts. Additionally, as technologies evolve, new knowledge is created, and our assessment of risks and benefits can change in the light of this new information. This can make ethics review more challenging, but of course, it is vital. So, what can we do? +
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Here are some of the many forms that virtual harassment can take. For each of the following, match the type of harassment to the description.
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Instances of harassment, hate speech, violent content, and XR pornography underscore the challenges surrounding user dignity and respect within virtual environments.
For instance, virtual harassment can have serious consequences for users that extend beyond the virtual environment, including emotional distress, anxiety, depression, and in extreme cases, suicide. Researchers and ethics experts need to be aware of the potential for harassment in virtual spaces, to ensure that measures are taken to protect potential users from harm.
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<span lang="EN-GB">Having planned the actionable steps resulting in the defined outputs, the main outcomes of the most feasible scenario should be detailed. Outcomes represent the longer-term effect and impact of the applied scenario on individuals, groups or the broader context. The changes occurring as a result of the identified outputs should first be reflected on, with the aim of specifying at least one outcome. The assessment of the outcome should include the understanding of the wider outreach, the potential transferability and significance of the scenario actions (impact aspect) and the duration of the consequences of such actions and key intervention points (long-term effect perspective).</span>
<span lang="EN-GB">· Build a vision and a mission: what is the main output and outcome of the successfully fulfilled feasible scenario? </span>
<span lang="EN-GB">· What are the main benefits? Who are the main beneficiaries of the impacts of your scenario? </span>
<span lang="EN-GB">· How can potentially negative impacts be transformed into assets or socially innovative outcomes?</span> +
Research ethics committee (REC) guidance and approval should be sought and respected at all times, including during pandemics. RECs should expedite the evaluation of research proposals that address urgent societal needs without compromising rigorous ethical standards. +
Doing research with communities affected by climate change: Climate-conscious methodologies matrix (for students and citizen scientists) +
Use you own research to '''reflect on the cards''' questions
OR use the scenario described above to:
*'''Reflect''' on how the question applies in this setting.
*'''Identify''' possible tensions or risks (e.g., exclusion, harm, extractivism).
*'''Propose''' a climate-just, community-informed course of action. +
Doing research with communities affected by climate change: Climate-conscious methodologies matrix (for researchers and ethics reviewers) +
Use you own research to '''reflect on the cards''' questions
OR use the scenario described above to:
*'''Reflect''' on how the question applies in this setting.
*'''Identify''' possible tensions or risks (e.g., exclusion, harm, extractivism).
'''Propose''' a climate-just, community-informed course of action. +
<span lang="EN-GB">A key aspect of (computational) reproducibility is availability of data. However, sharing of research data is still not the norm across disciplines. Developed co-creatively with stakeholders from major publishers, the workflow and email template provide a low-effort approach for publishers to nudge researchers towards sharing their data for journals operating under a “share upon request” policy. Documentation on the workflow and email template can be found in [https://doi.org/10.17605/OSF.IO/S7GJV TIER2 D5.2].</span> +
Try to answer the questions about the case. +
