A blog from the Centre for Research Ethics & Bioethics (CRB)

Author: josepinefernow

Human enhancement: Time for ethical guidance!

Perhaps you also dream about being more than you are: faster, better, bolder, stronger, smarter, and maybe more attractive? Until recently, technology to improve and enhance our abilities was mostly science fiction, but today we can augment our bodies and minds in a way that challenges our notions of normal and abnormal. Blurring the lines between treatments and enhancements. Very few scientists and companies that develop medicines, prosthetics, and implants would say that they are in the human enhancement business. But the technologies they develop still manage to move from one domain to another. Our bodies allow for physical and cosmetic alterations. And there are attempts to make us live longer. Our minds can also be enhanced in several ways: our feelings and thoughts, perhaps also our morals, could be improved, or corrupted.

We recognise this tension from familiar debates about more common uses of enhancements: doping in sports, or students using ADHD medicines to study for exams. But there are other examples of technologies that can be used to enhance abilities. In the military context, altering our morals, or using cybernetic implants could give us ‘super soldiers’. Using neuroprostheses to replace or improve memory that was damaged by neurological disease would be considered a treatment. But what happens when it is repurposed for the healthy to improve memory or another cognitive function? 

There have been calls for regulation and ethical guidance, but because very few of the researchers and engineers that develop the technologies that can be used to enhance abilities would call themselves enhancers, the efforts have not been very successful. Perhaps now is a good time to develop guidelines? But what is the best approach? A set of self-contained general ethical guidelines, or is the field so disparate that it requires field- or domain-specific guidance? 

The SIENNA project (Stakeholder-Informed Ethics for New technologies with high socio-ecoNomic and human rights impAct) has been tasked with developing this kind of ethical guidance for Human Enhancement, Human Genetics, Artificial Intelligence and Robotics, three very different technological domains. Not surprising, given the challenges to delineate, human enhancement has by far proved to be the most challenging. For almost three years, the SIENNA project mapped the field, analysed the ethical implications and legal requirements, surveyed how research ethics committees address the ethical issues, and proposed ways to improve existing regulation. We have received input from stakeholders, experts, and publics. Industry representatives, academics, policymakers and ethicists have participated in workshops and reviewed documents. Focus groups in five countries and surveys with 11,000 people in 11 countries in Europe, Africa, Asia, and the Americas have also provided insight in the public’s attitudes to using different technologies to enhance abilities or performance. This resulted in an ethical framework, outlining several options for how to approach the process of translating this to practical ethical guidance. 

The framework for human enhancement is built on three case studies that can bring some clarity to what is at stake in a very diverse field; antidepressants, dementia treatment, and genetics. These case studies have shed some light on the kinds of issues that are likely to appear, and the difficulties involved with the complex task of developing ethical guidelines for human enhancement technologies. 

A lot of these technologies, their applications, and enhancement potentials are in their infancy. So perhaps this is the right time to promote ways for research ethics committees to inform researchers about the ethical challenges associated with human enhancement. And encouraging them to reflect on the potential enhancement impacts of their work in ethics self-assessments. 

And perhaps it is time for ethical guidance for human enhancement after all? At least now there is an opportunity for you and others to give input in a public consultation in mid-January 2021! If you want to give input to SIENNA’s proposals for human enhancement, human genomics, artificial intelligence, and robotics, visit the website to sign up for news www.sienna-project.eu.

The public consultation will launch on January 11, the deadline to submit a response is January 25, 2021. 

Josepine Fernow

Written by…

Josepine Fernow, Coordinator at the Centre for Research Ethics & Bioethics (CRB), and communications leader for the SIENNA project.

SIENNA project logo

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Diversity in research: why do we need it? (by Karin Grasenick & Julia Trattnig)

Scientific discovery is based on the novelty of the questions you ask. This means that if you want to discover something new, you probably have to ask a different question. And since different people have different preconceptions and experiences than you, they are likely to formulate their questions differently. This makes a case for diversity in research, If we want to make new discoveries that concern diverse groups, diversity in research becomes even more important.

The Human Brain Project participated in the FENS 2020 Virtual Forum this summer, an international virtual neuroscience conference that explores all domains in modern brain research. For the Human Brain Project (HBP), committed to responsible research and innovation, this includes diversity. Which is why Karin Grasenick, Coordinator for Gender and Diversity in the HBP, explored the relationship between diversity and new discovery in the session “Of mice, men and machines” at the FENS 2020.  

So why is diversity in research crucial to make new discoveries? Research depends on the questions asked, the models used, and the details considered. For this reason, it is important to reflect on why certain variables are analysed, or which aspects might play a role. An example is Parkinson’s disease, where patients are affected differently depending on both age and gender. Being a (biological) man or woman, old or young is important for both diagnosis and treatment. If we know that diversity matters in research on Parkinson’s disease, it probably should do so in most neuroscience. Apart from gender and age, we also need to consider other aspects of diversity, like race, ethnicity, education or social background. Because depending on who you are, biologically, culturally and socially, you are likely to need different things.

A quite recent example for this is Covid-19, which does not only display gender differences (as it affects more men than women), but also racial differences: Black and Latino people in the US have been disproportionately affected, regardless of their living area (rural or urban) or their age (old or young). Again, the reasons for this are not simply biologically essentialist (e.g. hormones or chromosomes), but also linked to social aspects such as gendered lifestyles (men are more often smokers than women), inequities in the health system or certain jobs which cannot be done remotely (see for example this BBC Future text on why Covid-19 is different for men and women or this one on the racial inequity of coronavirus in The New York Times).

Another example is Machine Learning. If we train AI on data that is not representative of the population, we introduce bias in the algorithm. For example, applications to diagnose skin cancer in medicine more often fail to recognize tumours in darker skin correctly because they are trained using pictures of fair skin. There are several reasons for not training AI properly, it could be a cost issue, lack of material to train the AI on, but it is not unlikely that people with dark skin are discriminated because scientists and engineers simply did not think about diversity when picking material for the AI to train on. In the case of skin cancer, it is clear that diversity could indeed save lives.

But where to start? When you do research, there are two questions that must be asked: First, what is the focus of your research? And second, who are the beneficiaries of your research?

Whenever your research focus includes tissues, cells, animals or humans, you should consider diversity factors like gender, age, race, ethnicity, and environmental influences. Moreover, any responsible scientist should consider who has access to their research and profits from it, as well as the consequences their research might have for end users or the broader public.

However, as a researcher you need to consider not only the research subjects and the people your results benefit. The diversity of the research team also matters, because different people perceive problems in different ways and use different methods and processes to solve them. Which is why a diverse team is more innovative.

If you want to find out more about the role of diversity in research, check out the presentation “Of mice, men and machines” or read the blogpost on Common Challenges in Neuroscience, AI, Medical Informatics, Robotics and New Insights with Diversity & Ethics.

Written by…

Karin Grasenick, founder and managing partner of convelop, coordinates all issues related to Diversity and Equal Opportunities in the Human Brain Project and works as a process facilitator, coach and lecturer.

&

Julia Trattnig, consultant and scientific staff member at convelop, supports the Human Brain Project concerning all measures and activities for gender mainstreaming and diversity management.

We recommend readings

This is a guest blog post from the Human Brain Project (HBP). The HBP as received funding from the European Union’s Horizon 2020 Framework Programme for Research and Innovation under the Specific Grant Agreement No. 945539 (Human Brain Project SGA3).

Human Brain Project logo

How can we set future ethical standards for ICT, Big Data, AI and robotics?

josepine-fernow-siennaDo you use Google Maps to navigate in a new city? Ask Siri, Alexa or OK Google to play your favourite song? To help you find something on Amazon? To read a text message from a friend while you are driving your car? Perhaps your car is fitted with a semi-autonomous adaptive cruise control system… If any software or machine is going to perform in any autonomous way, it needs to collect data. About you, where you are going, what songs you like, your shopping habits, who your friends are and what you talk about. This begs the question:  are we willing to give up part of our privacy and personal liberty to enjoy the benefits technology offers.

It is difficult to predict the consequences of developing and using new technology. Policymakers struggle to assess the ethical, legal and human rights impacts of using different kinds of IT systems. In research, in industry and our homes. Good policy should be helpful for everyone that holds a stake. We might want it to protect ethical values and human rights, make research and development possible, allow technology transfer from academia to industry, make sure both large and smaller companies can develop their business, and make sure that there is social acceptance for technological development.

The European Union is serious about developing policy on the basis of sound research, rigorous empirical data and wide stakeholder consultation. In recent years, the Horizon2020 programme has invested € 10 million in three projects looking at the ethics and human rights implications of emerging digital technologies: PANELFIT, SHERPA and SIENNA.

The first project, PANELFIT (which is short for Participatory Approaches to a New Ethical and Legal Framework for ICT), will develop guidelines on the ethical and legal issues of ICT research and innovation. The second, SHERPA (stands for Shaping the ethical dimensions of Smart Information Systems (SIS) – A European Perspective), will develop tools to identify and address the ethical dimensions of smart information systems (SIS), which is the combination of artificial intelligence (AI) and big data analytics. SIENNA (short for Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact), will develop research ethics protocols, professional ethical codes, and better ethical and legal frameworks for AI and robotics, human enhancement technologies, and human genomics.

SSP-graphic

All three projects involve experts, publics and stakeholders to co-create outputs, in different ways. They also support the European Union’s vision of Responsible Research and Innovation (RRI). SIENNA, SHERPA and PANELFIT recently published an editorial in the Orbit Journal, inviting stakeholders and publics to engage with the projects and contribute to the work.

Want to read more? Rowena Rodrigues and Anaïs Resseguier have written about some of the issues raised by the use of artificial intelligence on Ethics Dialogues (The underdog in the AI and ethical debate: human autonomy), and you can find out more about the SIENNA project in a previous post on the Ethics Blog (Ethics, human rights and responsible innovation).

Want to know more about the collaboration between SIENNA, SHERPA and PANELFIT? Read the editorial in Orbit (Setting future ethical standards for ICT, Big Data, AI and robotics: The contribution of three European Projects), or watch a video from our joint webinar on May 20, 2019 on YouTube (SIENNA, SHERPA, PANELFIT: Setting future ethical standards for ICT, Big Data, SIS, AI & Robotics).

Want to know how SIENNA views the ethical impacts of AI and robotics? Download infographic (pdf) and read our state-of-the-art review for AI & robotics (deliverable report).

AI-robotics-ifographic

Josepine Fernow

This post in Swedish

We want solid foundations - the Ethics Blog

 

Ethics, human rights and responsible innovation

josepine-fernow2It is difficult to predict the consequences of developing and using new technologies. We interact with smart devices and intelligent software on an almost daily basis. Some of us use prosthetics and implants to go about our business and most of us will likely live to see self-driving cars. In the meantime, Swedish research shows that petting robot cats looks promising in the care of patients with dementia. Genetic tests are cheaper than ever, and available to both patients and consumers. If you spit in a tube and mail it to a US company, they will tell you where your ancestors are from. Who knows? You could be part sub Saharan African, and part Scandinavian at the same time, and (likely) still be you.

Technologies, new and old, have both ethical and human rights impact. Today, we are closer to scenarios we only pictured in science fiction a few decades ago. Technology develops fast and it is difficult to predict what is on the horizon. The legislation, regulation and ethical guidance we have today was developed for a different future. Policy makers struggle to assess the ethical, legal and human rights impact of new and emerging technologies. These frameworks are challenged when a country like Saudi Arabia, criticized for not giving equal rights to women, offers a robot honorary citizenship. This autumn marks the start of a research initiative that will look at some of these questions. A group of researchers from Europe, Asia, Africa and the Americas join forces to help improve the ethical and legal frameworks we have today.

The SIENNA project (short for Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact) will deliver proposals for professional ethics codes, guidelines for research ethics committees and better regulation in three areas: human genetics and genomics, human enhancement, and artificial intelligence & robotics. The proposals will build on input from stakeholders, experts and citizens. SIENNA will also look at some of the more philosophical questions these technologies raise: Where do we draw the line between health and illness, normality and abnormality? Can we expect intelligent software to be moral? Do we accept giving up some of our privacy to screen our genome for genetic disorders? And if giving up some of our personal liberty is the price we have to pay to interact with machines, are we willing to pay it?

 The project is co-ordinated by the University of Twente. Uppsala University’s Centre for Research Ethics & Bioethics contributes expertise on the ethical, legal and social issues of genetics and genomics, and experience of communicating European research. Visit the SIENNA website at www.sienna-project.eu to find out more about the project and our partners!

Josepine Fernow

The SIENNA projectStakeholder-informed ethics for new technologies with high socio-economic and human rights impact – has received just under € 4 million for a 3,5 year project under the European Union’s H2020 research and innovation programme, grant agreement No 741716.

Disclaimer: This text and its contents reflects only SIENNA’s view. The Commission is not responsible for any use that may be made of the information it contains.

SIENNA project

This post in Swedish

Approaching future issues - the Ethics Blog

Research data, health cyberspace and direct-to-consumer genetic testing

josepine-fernow2We live in a global society, which means there are several actors that regulate both research and services directed at consumers. It is time again for our newsletter on current issues in biobank ethics and law. This time, Biobank Perspectives  lets you read about the legal aspects of direct-to-consumer genetic testing. Santa Slokenberga writes about her doctoral dissertation in law from Uppsala University and how the Council of Europe and the EU interact with each other and the legal systems in the member states. She believes direct-to-consumer genetic testing can be seen as a “test” of the European legal orders, showing us that there is need for formal cooperation and convergence as seemingly small matters can lead to large consequences.

We also follow up from a previous report on the General Data Protection Regulation in a Swedish perspective with more information about the Swedish Research Data Inquiry. We are also happy to announce that a group of researchers from the University of Oxford, University of Iceland, University of Oslo and the Centre for Research Ethics & Bioethics at Uppsala University received a Nordforsk grant to find solutions for governance of the “health cyberspace” that is emerging from assembling and using existing data for new purposes. To read more, download a pdf of the latest issue (4:2016), or visit the Biobank Perspectives site for more ethical and legal perspectives on biobank and registry research.

Josepine Fernow

This post in Swedish

Approaching future issues - the Ethics Blog

More biobank perspectives

If you did not get your fill during the Europe biobank week in Vienna, we give you more biobank related news in the latest issue of Biobank Perspectives, our newsletter on current issues in biobank ethics and law.

This time, Moa Kindström Dahlin describes what BBMRI-ERIC’s new federated Helpdesk for ELSI-issues can offer. We also invite you discuss public-private partnerships in research at a workshop in Uppsala on 7-8 November.

The legislative process on data protection in the EU might be over for now but there is still activity in government offices. Anna-Sara Lind gives you her view on the consequences for Sweden. We are also happy to announce that the guidelines for informed consent in collaborative rare disease research have received the IRDiRC Recognized Resources label.

You can read the newsletter on our website, or download a pdf version.

Josepine Fernow & Anna-Sara Lind

This post in Swedish

We recommend readings - the Ethics Blog

 

 

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