This young actor and athlete with Down syndrome appeared before the US Congress at the end of October. He requested research funding for this chromosomal disease, rather than abort fetuses diagnosed before birth with Down syndrome.
French Television station BFM aired an extract of his powerfully moving and poignant speech before Congress. “I am a man with Down syndrome and my life is worth living”
The World Commission on the Ethics of Scientific Knowledge and Technology of UNESCO (COMEST) recently published a report on the ethical issues raised by robotics.
Robotic technologies are quickly evolving and becoming increasingly “autonomous”. Thus the question arises who exactly should bear ethical and moral responsibility for robot behavior?
Originally robotic technologies were primarily intended for military and industrial purposes, but today they are employed for diverse applications, for transport, education, health, individual assistance, domestic robotics, etc.
Furthermore, robotics increasingly depends on artificial intelligence, based on algorithms. These are known as “cognitive” robots, capable of learning from past experience which can then recalibrate their own algorithms. Therefore since their behavior is not completely predictable this necessitates serious ethical reflections.
For example, with autonomous cars, the main ethical issue involves the decision-making process. How should the vehicle be programmed to behave in the event of an unavoidable accident? Should it try to minimize the number of casualties, even if it means sacrificing the occupants, or should it protect them at all costs? Should these issues be regulated by law, standards or codes of conduct?
The report proposes reflecting on these ethical values including: human dignity, autonomy, privacy, beneficence, and justice, as well as the ethical principles of “do not harm” and responsibility.
Some of the report’s extracts:
“Dignity is inherent to human beings, not to machines or robots. Therefore, robots and humans are not to be confused even if an android robot has the seductive appearance of a human, or if a powerful cognitive robot has learning capacity that exceeds individual human cognition. Robots are not humans; they are the result of human creativity and they still need a technical support system and maintenance in order to be effective and efficient tools or mediators.”
“The ‘do not harm’ principle is a red line for robots. As many technologies, a robot has the potentiality for ‘dual-use’. Robots are usually designed for good and useful purposes (to diminish harmfulness of work, for example), to help human beings, not to harm or kill them(…) If we are morally serious about this ethical principle, then we have to ask ourselves whether armed drones and autonomous weapons should be banned.”
“Deterministic robots, and even sophisticated cognitive robots, cannot take any ethical responsibility, which lies with the designer, manufacturer, seller, user and the State. Therefore, human beings should always be in the loop and find ways to control robots by different means (e.g. traceability, off-switch, etc) in order to maintain human moral and legal responsibility.”
This approach correlates with recommendations being currently drafted by European and national authorities, specifying that robots should not be independent of human control nor allowed to direct changes in human labor.
On the 20th anniversary of the Convention on Human Rights and Biomedicine (Oviedo Convention), the Bioethics Committee (DH-BIO) of the Council of Europe held an international conference on October 24-25, 2017 on its relevance and challenges.
This international convention is the only legally binding international instrument to “protect Human Rights and the dignity of human beings with regard to the application of biology and medicine“. This reference text uses the principles of human rights; applying them to medicine for the protection of Human Rights. Signed on April 4, 1997, the convention became effective in December 1999. It has been ratified by 29 member states of the Council of Europe.
The text prohibits creating human embryos for research purposes, while allowing national legislation to rule on the issue of embryo research.
Furthermore, Article 13 states that any intervention seeking to modify the human genome cannot be undertaken if it modifies the genome of descendants.
Based on these principles, on October 12th the Parliamentary Assembly of the Council of Europe voted a recommendation to reaffirm the ban on inducing pregnancies from embryos or from genetically-modified gametes, and to establish common rules for the 47 member states of the Council of Europe.
The British representative of the DH-BIO protested that the Convention was too rigid, and asked for changes regarding modifications on the human genome. These remarks were followed by considerable controversy, especially since the United Kingdom has not yet ratified the Convention. The tension could be felt between those who value human dignity and those pushing for unbounded research.
Several speakers called for a straightforward public debate to restore confidence in medicine. Taking ethical and human rights values into account does not hinder, but rather encourages a science with conscience.
![[Press Release] « Anticipate before Dying »: Alliance VITA’s awareness campaign](https://www.alliancevita.org/wp-content/uploads/2017/10/anticipons-2-1080x675-1.png)
On Thursday October 19, 2017, Alliance VITA addressed the issue of Advance Directives. “ANTICIPATE, before dying” to provide information and raise public awareness with opinion polls and street surveys.
The IFOP poll showed that 86% of French citizens had not yet signed their advance directives, despite the February 2, 2016 law for this subject, and the informational campaign carried out by public authorities in coordination with the National Palliative and End-of-Life Care Center.
42% declare being unaware that these measures exist.
For those who are aware of advance directives, the other reasons mentioned for not signing include:
Alliance VITA notes that 21%, who are aware but haven’t signed their advance directive forms, attest they haven’t found a suitable response among the prerogatives proposed.
Is it preferable to wait and entrust the decision to caregivers and loved ones?
The appreciation differences for those over 65
The public who is the most concerned is the over 65 year-old age group with the following results:
The reality is that it be complicated to predict one’s choice ahead of time.
The street survey poll included the question: “What would you like to do before you die?”
In the past, Alliance Vita received national acclaim its’ survey: “Let’s Speak of Death” with 1000 quotes broadcast via the social networks, and local exhibitions with an explanatory guide. Now more than 1,000 Alliance VITA volunteers in 100’s of cities are polling pedestrians: “What would you like to do before you die?”
Alliance VITA’s website has published a video which filmed the public’s reactions to the pilot teams. Often, this question leads to fundamental discussions about life’s meaning. Their first conclusions:
The initial results are gathered together for each town at their local centers.
Asking such a question give individuals an opportunity to reflect and share the meaning of one’s life. As Hannah Arendt affirmed “Mortality is the sign that we are human.” Indeed, since the subject of death is practically taboo in our society, having “brotherly” exchanges between fellow mortals may paradoxically lead to becoming more humane.
Guides on Advance Directives distributed during the informational campaign
Stands staffed by Alliance VITA volunteers in almost 100 cities are offering a new VITA Guide to each person surveyed.
This simple, pedagogical tool is suitable for all individuals whether they are healthy or sick. It is a guide to promote relationships between caregivers and patients.
Alliance VITA will continue to distribute the Guides. The downloadable version is available through its site which is focused on listening and accompanying those at the end-of-life: www.sosfindevie.org.
On October 12, 2017, the Parliamentary Assembly of the Council of Europe (PACE) adopted a recommendation regarding the use of new genetic technologies in human beings, calling on the 47 member States to forbid establishing pregnancies from gametes or human embryos which have been genetically modified.
Headed by Belgian Senator Petra De Sutter, this recommendation appears at a time when the scientific community, as well as many countries, is very concerned about using genome editing tools – especially the CRISPR-Cas9 technique – if it involves modifying the human embryo or germlines.
The ethical stakes of such a commodification of human beings at the very beginning of life are vertiginous, and any germline editing carried out would be transmissible to the following generations. To sound an alert, Alliance VITA published a comprehensive report last May to shed light on the challenges involved in modifying the human genome with respect of Human Rights and the work carried out by PACE.
According to the Belgian Senator, the scientific consensus is adhering to a de facto moratorium, but this remains to be firmly grounded. The draft report summary declares: “Deliberate germline editing in human beings would cross a line viewed as ethically inviolable.” The recommendation cites that “other techniques, such as pronuclear transfer technology (“3-parent” IVF technique) which is used to avoid maternal inheritance of mitochondrial disease transmission, have been used and resulted in several babies being born (for reasons other than the treatment of mitochondrial disease), despite considerable ethical controversy and scientific uncertainty about the long-term effects.”
The position affirmed by the Council of Europe is crucial since numerous scientific and ethical bodies are starting to make recommendations. It is based on the International Convention on Human Rights and Biomedicine (“Oviedo Convention”) which will be marking its 20-year anniversary in a few days. Regarding genetic modification, Article 13 posits that “An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modifications in the genome of any descendants.”
Many Council of Europe member States and all of those in the European Union forbid procedures for human genome editing. The text “urges member States which have not yet ratified the Oviedo Convention to do so without further delay, or as a minimum, to put in place a national ban on establishing pregnancies with germinal cells or human embryos having undergone intentional genome editing.”
Nevertheless, for Alliance VITA, this recommendation does not address some serious uncertain issues. It does not recommend a ban on performing research on embryos and germlines, even though this is a highly controversial issue from both ethical and human standpoints. It also calls for a broader public debate, thus attentive vigilance is warranted.
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For more information on these issues: Audition by ’OPCEST; Blanche Streb – Alliance VITA
