But what is ethical? A paper already 22 years back proposed 7 requirements that make a coherent framework.
value— enhancements of health or knowledge must be derived from the research;
scientific validity—the research must be methodologically rigorous;
fair subject selection—scientific objectives, not vulnerability or privilege, and the potential for and distribution of risks and benefits, should determine communities selected as study sites and the inclusion criteria for individual subjects;
favorable risk-benefit ratio—within the context of standard clinical practice and the research protocol, risks must be minimized, potential benefits enhanced, and the potential benefits to individuals and knowledge gained for society must outweigh the risks;
independent review— unaffiliated individuals must review the research and approve, amend, or terminate it;
informed consent—individuals should be informed about the research and provide their voluntary consent; and
respect for enrolled subjects—subjects should have their privacy protected, the opportunity to withdraw, and their well-being monitored.
Fulfilling all 7 requirements is necessary and sufficient to make clinical research ethical.
As a part time ethicist I am quite happy if an earlier article gets some recognition. Recognition is something different to the craziness of summing up impact factors, it is some kind of payback by longterm influence.
The startup world’s dirty not-so-secret is that most startups fail. Startups are risky ventures and their investors know it, so they cast a wide net, placing lots of bets on lots of startups and folding the ones that don’t show promise, which sucks for the company employees, but also for the users who depend on the company’s products.
Terry Byland is the only person to have received this kind of implant in both eyes. He got the first-generation Argus I implant, made by the company Second Sight Medical Products, in his right eye in 2004 and the subsequent Argus II implant in his left 11 years later. He helped the company test the technology, spoke to the press movingly about his experiences, and even met Stevie Wonder at a conference. “[I] went from being just a person that was doing the testing to being a spokesman,” he remembers.
Yet in 2020, Byland had to find out secondhand that the company had abandoned the technology and was on the verge of going bankrupt. While his two-implant system is still working, he doesn’t know how long that will be the case. “As long as nothing goes wrong, I’m fine,” he says. “But if something does go wrong with it, well, I’m screwed. Because there’s no way of getting it fixed.”
67 authors, 83 pages, 5408 parameters in a model, the internals of which no one can say they comprehend with a straight face, 6144 TPUs in a commercial lab that no one has access to, on a rig that no one can afford, trained on a volume of data that a human couldn’t process in a lifetime, 1 page on ethics with the same ideas that have been rehashed over and over elsewhere with no attempt at a solution – bias, racism, malicious use, etc. – for purposes that who asked for?
Nature schreibt in einem neuen Artikel über die 1964 Ethik Konvention von Helsinki und den 1979 Belmont Report
But these are generally silent about the benefits and harms of academic research whose conclusions could affect groups of people that haven’t directly participated. Examples include research that could lead to people being stigmatized, discriminated against or subjected to racism, sexism or homophobia, among other things. Such work might be used to justify undermining the rights of specific groups, simply because of their social characteristics. Guidance developed by Springer Nature editors aims to fill this gap in the frameworks.
Die Kommentare zu diesem Vorschlag sind nicht sonderlich positiv. Denn letztendlich sind die @Nature Argumente nur vordergründig ethisch — sie ideologisieren vor allem Wissenschaft als “woke”.
Was ist denn schon “potentieller” Schaden und wer definiert ihn? Letztlich ist doch jedes wissenschaftliche Ergebnis dual use: Kernspaltung, Gene Editing und natürlich auch Epidemiologie und AI.
broad framework for involving citizens to enable the responsible design, development, and deployment of algorithmic decision-making systems. This framework aims to challenge the current status quo where civil society is in the dark about risky ADS.
I think that the responsiblity is not primarily with the developer but with the user and the social and political framework ( SPON has a warning about the numerous crazy errors when letting AI decide about human behaviour while I can also recommend here the “Weapons of Math Destruction” ).
This discussion between a Google engineer and their conversational AI model helped cause the engineer to believe the AI is becoming sentient, kick up an internal shitstorm and get suspended from his job. And it is absolutely insane. https://t.co/hGdwXMzQpXpic.twitter.com/6WXo0Tpvwp
Rechtzeitig vor Weihnachten greift der SPIEGEL das Thema “effektiver Altruismus” auf wobei es hier schwer ist, den exzellenten Wikipedia Eintrag noch zu toppen.
Ich bin nicht von dem Ansatz überzeugt. Pervers erscheint mir die earning to give Idee, “eine Hochertrags-Karriere in einer potenziell unethischen Industrie zu verfolgen” etwa in der Hochfinanz oder bei Meta, um danach mehr Geld zu spenden. Es spricht allerdings nichts dagegen, Spenden rational und mit Risikodiversifikation in politisch und sozial verträgliche Bereichen zu investieren.
Der effektive Altruismus ist kaltherzig, wurde nicht umsonst von Pokerspielern erfunden und auch nur von Ethikern wie Singer propagiert. Ich vermute er wird nicht deshalb scheitern, weil er elitär abgehoben ist und letztendlich Konkurrenz der Chatities befeuert, sondern weil der kalte Altruismus durch die persönliche Distanz keine positiven Feedbackschleifen entwickeln kann.
Böse Zungen lästern schon lange über den Ethikrat, er würde nur als PR Büro für den/die jeweilige Vorsitzende dienen.
Der Staatsrechtler Möllers kommentierte die Stellungnahmen des Ethikrates vor kurzem in einem Dlf Interview
Er muss irgendwas sagen, was alle sowieso schon wissen, was sich auch nicht in den rechtlichen Argumenten auflöst und was irgendwie einen Gehalt hat, der aber auch nicht zu umstritten sein darf, weil sonst begibt sich der Ethikrat gleich wieder in einen politischen Konflikt. Da bleiben oft doch nur ein bisschen einerseits Gemeinplätze übrig und andererseits auch mal Aufforderungen zur Solidarität, von denen ich meine, dass sie politisch wahrscheinlich richtig ist – es ist richtig zu sagen, wir müssen noch ein bisschen durchhalten und es geht nicht so schnell – aber die vielleicht dann auch keine richtig ethischen Argumente sind, sondern eher politische Argumente, die den Laden ein bisschen zusammenhalten in einem Moment, in dem sich alles etwas aufzulösen droht… Auch dazu kleben die Ausführungen doch sehr am positiven Recht und verhalten sich gar nicht dazu, dass man das ja auch gestalten kann.
When Bohr bemoaned to Ernest Rutherford, “Dirac never says anything,” Rutherford replied with a story about a shop owner assuaging a dissatisfied customer who had purchased a parrot that would not speak. “Please forgive me. You wanted a parrot that talks, and I gave you the parrot that thinks.”
Digital images submitted with a manuscript for review should be minimally processed (N).
Specific feature within an image may not be enhanced, obscured, moved, removed, or introduced (J, E). The use of touch-up tools, such as cloning and healing tools, or any feature that deliberately obscures manipulations, is unacceptable (N).
Dividing lines may not be added between juxtaposed images taken from different parts of the same gel or from different gels, fields, or exposures (J, E). If juxtaposing images is essential, the surrounding gel shown at least at the size of the band, borders should be clearly demarcated and described in the legend (N).
Images gathered at different times or from different locations should not be combined into a single image, unless it is stated that the resultant image is a product of time-averaged data or a time-lapse sequence.
Adjustments of brightness, contrast, or color balance that have been applied to the entire image may not enhance, erase, or misrepresent any information present in the original, including the background (J, E).
Images from the same object may not be repeated within the manuscript. Any reuse of images, including control images from earlier papers, should be explicitly stated and justified in the legend (J) as reuse would pretend any independent evidence. Reprobed Western blots should be clearly indicated.
Nonlinear adjustments (e.g., changes to gamma settings) must be disclosed in the figure legend (J). Processing such as changing brightness and contrast is appropriate only when it is applied equally across the entire image and is applied equally to controls. Contrast should not be adjusted so that data disappear (N).
Excessive manipulations, such as processing to emphasize one region in the image at the expense of others, is inappropriate (N).
Deposition of all RAW image files is encouraged (N). An option is figshare.com that is available since 2014.
There should be a better distinction of object and image, e.g. the re-use of the same object in multiple images should be banned. With any additional image in a paper, this is assumed to be additional and independent evidence of a given fact. Exception of that rule is a clear label (box, arrows, letters) as well as a legend why and from where it has been taken from (J).
These are general rules only. Specific rules exist for electrophoretic blots and microscopy (N). Additional points
There should be a reference to any work outside of the current paper, if the object and/or image has been used elsewhere.
There is a need for better captions that specify always experimental conditions, object, direction and resolution. Unzoomed controls and reason for the selection of certain object areas along with repeated experiments would be often helpful. The question is largely unsolved what constitutes a representative image?
There is a need of professional integrity offices at universities and research centers.
More training and clear guidelines are favoured as fixes for bad research practices, but a new study suggests that these efforts are wasted if researchers are inherently dishonest.
The study published in BMC Medical Ethics revealed that childhood education and personality traits have a greater influence on how researchers conduct their work than formal training in research integrity.
The few empirical articles that examined determinants of misconduct found that problems from the research system (e.g., pressure, competition) were most likely to cause inadequate research practices. Paradoxically, the majority of empirical articles proposing approaches to foster integrity focused on techniques to build researchers’ awareness and compliance rather than techniques to change the research system.
Discussing science fraud, techniques in seminars may even have adverse effect as summarized by Resnik.
While most people would endorse this as a worth-while goal, research has produced little evidence that RCR education actually helps to achieve it … Moreover, some studies have shown that RCR education may be associated with certain of unethical attitudes or misbehaviors.
According to Anderson training in research ethics was positively associated with problematic behavior. Inherently dishonest people remain dishonest.
So if we believe Satalkar, Bonn, Resnik and Anderson – the system has to change with a high entry gate for dishonest people.
Diet Stellungnahme “Eingriffe in die menschliche Keimbahn” des deutschen Ethikrates 2019 hat auf S. 86 einen netten Schreibfehler, den das Redaktionsteam und alle 26 Autoren übersehen haben.
Seit der wissenschaftlich-industriellen Revolution ist „moderne“ Wissenschaft und Technik durch eine zweifache Komplikation ausgezeichnet: Die technikgestützte Handlung erfüllt zum einen als Mittel ihren Zweck nur noch mit einer gewissen Wahrscheinlichkeit, unter anderem deshalb, weil zwischen Ausgangssituation und Endzweck oft viele Vermittlungsstufen mit unübersehbaren Folgen liegen (Handeln unter Bedingungen der Unsicherheit).
Zum anderen gilt: Wer die Gefahren bei wissenschaftlich-technischen Prozessen trägt, profiziert nicht automatisch auch davon (Handeln unter Bedingungen der Ungleichheit der Betroffenen). Darüber hinaus stellt sich das Problem, dass manche Folgen eines Handelns – etwa aufgrund unüberschaubarer Wechselwirkungen mit anderen Handlungen oder Einflussfaktoren – gänzlich unabwägbar sein können (Handeln unter Bedingungen der Unabwägbarkeit der Folgen).
profiziert? Zuerst dachte ich an provoziert oder profiliert. Mit dem weiteren Verlauf ist aber dann doch eher profitiert gemeint. Vielleicht ist es aber ein Neologismus des Ethikrates der “für den allgemeinen Gebrauch eine sprachliche Neuprägung” erwägt? Dass man das Thema im Sinn von Lindner FDP den Profi–Profs überlassen soll?
given your previous involvement in the experiment of He Jiankui, I would like to make a proposal to you.
As a genetic epidemiologist, I have looked into the technical details of Dr. He’s presentation in Hong Kong. I am deeply concerned about the two girls and and what the international community could do for the “CCR5 twins” but also for the “PCSK9 baby” that will be born in about 10 weeks.
As the official Chinese investigation report leaves a lot of open question, I suggest that an international commission including also scientists and medical doctors from abroad should examine these children. Very much in accordance to the International Atomic Energy Agency there should a multidisciplinary group be built that is allowed to do on-site visits. While I agree with many other ethicists and geneticists that the children and their parents should not be exposed to the public, I think a group of experts need to examine the children and resequence their genomes to offer them the best care available.
Eugenics is a word many associate with America’s historical bans on interracial marriage, Nazi Germany’s quest for Aryan supremacy, and stolen Australian Aboriginal children. Its connection to China’s one-child policy is less obvious, but no less potent. Children were seen as valuable resources, and when only one child was permitted per family, there was tremendous pressure to secure the optimal outcome … “Deformed fetuses” are encouraged to be terminated in China because people who require extra care and function outside conventional norms are largely viewed as burdens on society and the family. In lower tier cities, disabled children are often hidden from view and afforded little dignity or opportunities for upward mobility. When people with disabilities are not being pitied as subhuman, those who manage to overcome societal judgment and obstacles are then trotted out as inspiration porn for able-bodied people. Many Chinese people struggle to see beyond someone’s disability. The Chinese word for “disabled” is made of up characters that mean “incomplete/broken” and “disease/suffering,” leaving little room for a fulfilling existence.
As a genetic community we owe something to these children as we collected all those genomic data and developed also the tools to modify a genome but we did not clearly voice our concerns of a germline based therapy. Based on a previous analysis I am sure that the two girls will have many more deficits than are currently known.
Knowing more about the details would be a further warning sign of doing such experiments.
The plot above is the result of the “World Value Survey”. It assumes that there are two major dimensions of cross cultural variation in the world: “Traditional values versus secular-rational values” and “Survival values versus self-expression values”.
Sounds interesting at least for 3 seconds. Then we are discovering the strange axis labels – the opposite of tradition is lost tradition not rational value. The authors explain traditional values by the importance of religion, parent-child ties, deference to authority and traditional family values. People who embrace these values also reject divorce, abortion, euthanasia and suicide. These societies have high levels of national pride and a nationalistic outlook.
As a protestant, Inglehart–Welzel put me top right “having less or no traditional values, no religion, parent-child ties, no need for authority and traditional family values”. According to them I am “pro divorce, abortion, euthanasia and suicide with low level of national pride” – which is clearly wrong, just by a simple example.
I am quite sure that a single item analysis – lets say divorce rate vs Gross Domestic Product would compare countries much better. But do we even need such kind of science? The whole scheme is dangerously simplified – producing more stereotypes that I would have expected from any political scientists.
Damit stoße ich nun wieder an ihre alte Frage an mich: wie ich mich denn in dieser Zeit als Deutscher fühle? Meine Antwort muß sein: Gar nicht. So wie Hölderlin einst sagte, es sei die Zeit der Könige nicht mehr, so ist nun die Zeit der Völker nicht mehr. (Heinrich Blücher)