Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease at the University of Cape Town in South (...) Africa. The main aim of the study was to understand ethical challenges in obtaining informed consent in the RHDGen study. We used a qualitative study methodology involving in-depth interviews and participant observations. Our study participants were RHDGen cases, healthy controls and research staff involved in the recruitment of RHDGen cases and controls. In total, we conducted 32 in-depth interviews with RHDGen cases and controls, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen cases and controls. The interviews were conducted in English, audio-recorded and transcribed verbatim. Data were analyzed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa. Most healthy controls joined the RHDGen study in order to be screened for rheumatic heart disease. A majority of RHDGen cases decided to join the RHDGen study because of therapeutic misconception. The ethical challenges that impacted on obtaining informed consent in the RHDGen study were complex. In this study, the main challenges were diagnostic misconception among RHDGen controls and therapeutic misconception among RHDGen cases. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants, study staff (...) and with individuals who refused to participate. In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

ABSTRACT The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with (...) RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. (shrink)

As artificial intelligence (AI) continues to proliferate into every area of modern life, there is no doubt that society has to think deeply about the potential impact, whether negative or positive, that it will have. Whilst scholars recognise that AI can usher in a new era of personal, social and economic prosperity, they also warn of the potential for it to be misused towards the detriment of society. Deliberate strategies are therefore required to ensure that AI can be safely integrated (...) into society in a manner that would maximise the good for as many people as possible, whilst minimising the bad. One of the most urgent societal expectations of artificial agents is the need for them to behave in a manner that is morally relevant, i.e. to become artificial moral agents (AMAs). In this article, I will argue that exemplarism, an ethical theory based on virtue ethics, can be employed in the building of computationally rational AMAs with weak machine ethics. I further argue that three features of exemplarism, namely grounding in moral exemplars, meeting community expectations and practical simplicity, are crucial to its uniqueness and suitability for application in building AMAs that fit the ethos of AI4SG. (shrink)

In this article, a concise argument for computational rationality as a basis for artificial moral agency is advanced. Some ethicists have long argued that rational agents can become artificial moral agents. However, most of their views have come from purely philosophical perspectives, thus making it difficult to transfer their arguments to a scientific and analytical frame of reference. The result has been a disintegrated approach to the conceptualisation and design of artificial moral agents. In this article, I make the argument (...) for computational rationality as an integrative element that effectively combines the philosophical and computational aspects of artificial moral agency. This logically leads to a philosophically coherent and scientifically consistent model for building artificial moral agents. Besides providing a possible answer to the question of how to build artificial moral agents, this model also invites sound debate from multiple disciplines, which should help to advance the field of machine ethics forward. (shrink)

continent. 1.4 (2011): 242—252. Introduction The following two works were produced by visual artist Jonas Staal and writer Vincent W.J. van Gerven Oei during a visit as artists in residence at The Bag Factory, Johannesburg, South Africa during the summer of 2010. Both works were produced in situ and comprised in both cases a public intervention conceived by Staal and a textual work conceived by Van Gerven Oei. It was their aim, in both cases, to produce complementary works that could (...) be read “through each other,” in which the movement of artistic construction would be imitated by textual deconstruction and vice versa. Both works deal with the way in which capital, apartheid, and monumentality are interwoven in South-African society. The Missing Link addresses a monument for democracy, erected on the premises of a private corporation running both an amusement park and the Apartheid Museum franchise. The textual intervention accompanying this public intervention investigates the limits of the inclusiveness of the anti-discrimination section in the South-African constitution, itself a monumental work of democracy. The Monument for the Distribution of Wealth deals with the history and eventual dissolution of a monumental square, commemorating the Soweto Uprising, in one of the poorest townships of Johannesburg. The history accompanying this public dismemberment of memory is equally fragmented, which is expressed by the many voices recounting uncertain and perhaps even irrelevant “facts” about the genius loci, the way in which the memorial space has actually entered into the memory of the inhabitants surrounding it. Next to their individual practices, Staal and Van Gerven Oei have worked together on a number of projects ever since 2007, including several art residencies. Their work involves an investigation of the different interfaces between art, politics, and public space in media ranging from theater and public interventions, to video installations and (co-authored) textual works. The Missing Link Missing Link (1) Missing Link (2) Missing Link (3) Intervention on the monument entitled The Seven Pillars of the Constitution , part of the Apartheid Museum in Johannesburg, South Africa. The Seven Pillars represent the constitutional values propagated in South Africa since the abolition of the apartheid regime. The monument and museum were built by the Gold Reef Resorts corporation, which is also responsible for the theme park and casino next to it. By placing the word “capitalism” on the wall surrounding the museum, the capitalist system and the constant social divisions that it implies are interpreted as sophistic continuations of apartheid politics. Through the capitalist system, apartheid is still operational within South African society. Whereas during the apartheid regime, the separation clearly ran along race divisions, in the current, “democratic” system, the same actual separation is sustained without it being an explicit element of the foundations of the country, i.e. the constitution. This intervention foregrounds the constant role of capitalism is both periods. At the same time the intervention acknowledges that contemporary Western artisthood is a mirror of the privileges that are offered by the capitalist system, and the type of artist that it produces. The intervention initiates a critical discourse concerning the capitalist system situated within the disaster of capitalism itself, in other words: through the desire to break with the presumption that art would be able to operate outside the capitalist system and to confirm that art—and the artist himself—is in fact modeled on this system. The public intervention by Staal was supplemented by a textual intervention by Van Gerven Oei: a proposition to alter the seventeenth amendment of the South African constitution. Even though the anti-discrimination legislation in South-Africa is one of the most stringent and inclusive in the world, one factor—wealth—remains outside its scope, thus continuing the schisms along racial lines produced during the apartheid regime: §9.3. The state may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including race, gender, sex, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, age, disability, religion, conscience, belief, culture, language, birth, and wealth. Monument for the Distribution of Wealth Intervention concerning the June 16 Memorial Acre in Central Western Jabavu, one of the poorest townships of Johannesburg. The monument comprises a park on which different are placed recalling an important protest the black population against the former apartheid regime. In 1976, from a school adjacent to the park, they started a massive protest against the introduction of Afrikaans in the school curriculum. The police reacted violently, and shot several hundreds of students. The construction of the June 16 Memorial Acre was started in 2005, and from the start was the paragon of corruption. Coordinated by local politicians, some family members of the protest leader from 1976 gained control of the realization of the monument, outside the regulation through external institutions. The available budget of 41 million rand (at that time well over 5 million euro) was largely embezzled. In the meantime, the monument has become fully dilapidated and defaced. The park has become overgrown with weeds and covered in a layer of dirt, and the local population is slowly plundering the square to use the material for the construction and decoration of their own houses. The Monument for the Distribution of Wealth develops the dynamics already existent around the June 16 Memorial Acre. Without obtaining official permission in advance, several local inhabitants were hired to break down the monument, sort the materials, and offer it to the neighborhood. Thus, the redistribution of wealth after the fall of the apartheid regime is finally taking place, albeit from the mere remains of the capital that was once invested in the community. The words “monument” and “for free” are spray-painted on the stacks of material, both in English and Zulu, as these are locally the most common languages. Van Gerven Oei supplemented Staal’s public intervention with an account of the history of the monument based on a series of interviews. The account clarifies how the different interests within the protest 1976 are reflected in the exceeding decay of the park, and how in the end those interests were represented by the June 16 Memorial Acre. Monument for the Distribution of Wealth 1: Removing stones Monument for the Distribution of Wealth 3: Pulling down statues Monument for the Distribution of Wealth 4: Offering the material Monument for the Distribution of Wealth 5: Offering the material Monument for the Distribution of Wealth 6 The next day A Fragmentary History of the Monument for the Distribution of Wealth, Formerly Known as the June 16 Memorial Acre in Central Western Jabavu, Soweto Vincent W.J. van Gerven Oei The following text, based on interviews and online research aims to provide parts of a history of the park in front of Morris Isaacson High School in Central Western Jabavu, Soweto. The idea for the transformation of the park into a memorial site has its source in the events of June 16, 1976: the start of the the student uprising in Soweto. The development of the park was started in the early 1980s, and the actual transformation into a memorial site, the June 16 Memorial Acre, was initiated in 2005. Over the last few years, several monumental additions have been made to the park: A marble monument with three pillars was revealed on June 16, 2006. A sculpture of a book and several billboards on June 16, 2008. A sculpture of student leader Tsietsi Mashinini on June 16, 2010. The park was transformed into the Monument for the Distribution of Wealth on August 3, 2010. According to the entry “Youth Struggle” on the website South African History Online, the Bantu Education Act was introduced in 1953 . In 1954 , Dr Verwoerd, Minister of Native Affairs, stated: “What is the use of teaching the Bantu child mathematics when it cannot use it in practice? That is quite absurd.” According to the entry “Soweto uprising” on Wikipedia, the Afrikaans Medium Decree was issued in 1974 , forcing all black schools to use Afrikaans and English in a 50-50 mix as languages of instruction. The Regional Director of Bantu Education (Northern Transvaal Region), J.G. Erasmus, told Circuit Inspectors and Principals of Schools that from January 1, 1975 , Afrikaans had to be used for mathematics, arithmetic, and social studies from standard five (7th grade). English would be the medium for general science and practical subjects. Indigenous languages would be used for religion instruction, music, and physical culture. According the entry “Soweto uprising” on Wikipedia, on April 30, 1976 , students from the Orlando West Junior School in Soweto went on strike, refusing to go to school. Their example was followed by other schools in Soweto. A student from Morris Isaacson High School, Toboho “Tsietsi” Mashinini, proposed a meeting on June 13, 1976 to discuss further action. According to Weizmann Hamilton’s article “The Soweto Uprising 1976,” which appeared in the September 1986 edition of Inqaba Ya Basebenzi (Fortress of the Revolution), on June 13, 1976 , the South African Students’ Movement called a meeting at the Donaldson Community Center in Orlando. 300-400 Students representing 55 schools decided to hold a mass demonstration on June 16. According to Brian Mokhele, member of the Joint Community Safety Forum, Dr Edelstein was the first victim of the Soweto uprising and killed the day before the march on June 15, 1976 . Edelstein was an administrator at the pass office in Jabavu and gave golf courses to the local community. Edelstein was put in a garbage bin and pierced by pickaxes. The garbage bin was left at the very spot of the murder for many years. A few years ago, a child was beheaded at the same spot, and the basketball court next to it has been abandoned since. According to Marcus Neustetter, founder of the Trinity Session, this story is untrue. According the entry “Soweto uprising” on Wikipedia, on June 16 , Tsietsi Mashinini led students from Morris Isaacson High School to join up with others who walked from Naledi High School. A crowd of between 3,000 and 10,000 eventually ended up near Orlando High School. According to Raymond Marlowe, a local photographer, Tsietsi Mashinini was heading the march. According to the entry “Hector Pieterson” on Wikipedia, Dr Edelstein died on June 16, 1976 , stoned to death by mob and left with a sign around his neck proclaiming “Beware Afrikaaners.” The first child to die that day was called Hastings Ndlovu. According to Pat Motsiri, Orlando West is claiming struggle heritage through the Hector Pieterson Museum, while Hector Pieterson was from Jabavu. According to Pat Motsiri, his generation effectively struggled between 1980 and 1991, forcing the release of Nelson Mandela and negotiations with the apartheid regime while the 1976-generation was safely in exile. Nevertheless, this has not been recognized in any monument. After the abolition of apartheid, the generation from 1976 returned from exile, occupied important government and ANC positions, creating an abundance of 1976 memorials and refusing to acknowledge that this was only possible because of the younger generation’s struggle. He calls this a generational conflict. According to Archibald Dlamini, the park officer responsible for the Memorial Acre, he started working for the municipality in 1978. In 1981/82 , Isaac Makhele from Pimville, who used to work in the cemetery business, was the first developer of the park. It used to be just a normal park until City Parks decided to develop the Memorial Acre in 2006. In 2007 the work was stopped by the community. According to Brian Mokhele, he left the country in 1989 after he participated in the riots of 1986. But when he returned in 1999 he found that nothing had changed. He says that they were promised to be protected by the Constitution, but that reality is different. The police uses fear to suppress them so that they don’t come out to talk openly. He has been arrested twice, both times harassed and tortured by the police, but in the end always released without indictment. He says that this is their way to threaten communities to back off from politics. According to Moses, who is sitting outside rolling a joint, Brian knows everything. He tells Brian to tell me everything he knows. According to Brian Mokhele, Tsietsi Mashinini was possibly murdered in 1990 during his exile in New York. Two weeks before he was supposed to return to South Africa, his papers in order, he was found dead under mysterious circumstances. His coffin was sealed when he was buried. According to Pat Motsiri, he came up with the idea for the Memorial Acre in 2003 . He submitted the documents for the proposal to the council, which sidelined him as soon as the budget came out in 2005 . According to Brian Mokhele, there was on estimation R 41,000,000 spent to redesign the park and turn it into the Memorial Acre. The millions were divided by Amos Masondo, the mayor of Soweto, the local councilor Bongani D. Zondi, and the director of the city of Johannesburg, Pat Lephunya. They were dividing the money between several contractors: Tsietsi Mashinini’s brothers were involved in the development of the park, they got the tender to do the green areas, the landscaping. Construction was done by other companies, some did the paving, the toilets, etc. EMBA, a private company appointed by the municipality was in control of the money flow, but the money was quickly gone. According to Raymond Marlowe, the contractor bought a BMW with the money. According to Archibald Dlamini, the Mashinini brothers got the tender, so the space would look more like the other places around in Soweto. It was agreed that after they were done, they would return the property to the municipality. They did whatever they could do. According to Mafaisa, a member of the Jabavu business community, he was one of the contractors for the landscaping and the pavement under Mpho Mashinini, one of the brothers. He says that I should contact Mavi for information on Mpho. According to Poi Stuurman, a local youth worker, Mafaisa is one of the guys who ran away with the money. According to Mavi, Mpho Mashinini was never a contractor. The contracts were organized by Sbu Butelezi, the former head of the Gauteng Department for Public Works. The June 16 Foundation and the Mashinini brothers will be the beneficiaries of the park when it is finished. According to Brian Mokhele, City Parks did not accept the Memorial Acre because it was not finished. The rest of the year, the unfinished park is not maintained, as should have happened. This was done deliberately so that in the end they can just clean the whole thing up and have a reason to redo the whole park. According to Brian Mokhele, the Mashinini brothers now work for the government. People that manipulate for money purposes always come from the government’s side. Because the park was left unfinished, the people from the neighborhood are taking away the stones to decorate their own homes with. According to Archibald Dlamini, because City Parks doesn’t accept responsibility of the park, he officially has nothing the guard, except for his cottage, which is municipal property. The thieves come at night and destroy the park, but he cannot do anything because he is sleeping. According to the website of the Thanda Foundation on June 16, 2006 a bronze statue of Hector Pieterson, the first child to die in the 1976 protests, made by Kobus Hattingh and Jacob Maponyane was unveiled in the Maponya Mall in Soweto. The statue is sculpted after the famous image shot by Sam Nzima of Mbuyisa Makhubo carrying the dead body of the boy. The sculpture was sponsored by the Thanda Foundation, founded by the Swedish entrepreneur Dan Olofsson and South-African entrepreneur Matthews Phosa. According to the official website of the City of Johannesburg, the Memorial Acre and Artwork were unveiled in 2006. According to a blog post on sowetouprisings.com, the Memorial Acre was still under development on July 24, 2006. According to Archibald Dlamini, City Parks only cleans up the park once a year just before the June 16 celebrations. Everybody is waiting for the Mashinini brothers to finish their job. The last time he talked with them was in 2007 . According to a sign on the school grounds of the Morris Isaacson High School, the June 16 Trail will be finished in 2008 . According to a blog post on sowetouprisings.com, the Memorial Acre contains another monument erected in Tsietsi’s honor. The monument was created as part of the Sunday Times Heritage Public Art program. Its physical form resembles a giant book which symbolizes the crisis in education experienced in 1976. On the face of the book is the map of the route taken by the students from Morris Isaacson High School in Central Western Jabavu to Phefeni Junior Secondary in Orlando West (currently the site of the Hector Pieterson Museum), while the back cover of the ‘book’ is inscribed with a tribute to Tsietsi Mashinini. The monument was revealed on June 16, 2008 . According to Marcus Neustetter, the billboards on the Memorial Acre were part of a school project realized in 2008. Following several workshops, the students from different high schools along the June 16 Trail were invited to work with artists on the billboards, while the neighborhood community was invited to watch the process during the festivities on June 15 and 16, 2008 . The billboards were supposed to be removed because of construction works on the Memorial Acre, which never ended up happening. According to Brian Mokhele, the former toilet facilities were converted into a house for the park officer. This park officer has been working for city parks for more than 12-15 years, but does nothing here, because the park, including the new toilet buildings, is not finished. The government is now moving around looking for people to take this job because they stopped it. They confronted everybody who was going in and chased them away. According to John, in 2009 , some girls, around 16 or 17 years old, were raped by four men who had been drinking in a local shebeen. When the bar quit they said that they would go home by car, but instead raped the girls on the Memorial Acre nearby. This happened in the unfinished toilets, because the doors couldn’t be closed. According to Brian Mokhele, there used to be some fences around the park because of the construction work that was eventually stopped, but these were also stolen. According to Archibald Dlamini, people from the neighborhood started about two and a half years ago, and the last piece was stolen near the end of 2009 . Sometimes he would catch someone with a roll of fence, and then use it for his own cottage. According to the official website of the City of Johannesburg, a statue of Tsietsi Mashinini by Johannes Pokhela was revealed on June 16, 2010 , “Youth Day.” According to Shirley Makutoane, deputy principal of Isaac Morrison High School, the statue of Tsietsi Mashinini, funded by the June 16 Foundation, has temporarily been placed within the school perimeter. The statue will be moved to the Memorial Acre when it will be finished, in 2011 . According to Brian Mokhele, beside the June 16 Foundation, there is also a June 16 Memorial Acre Foundation. Both foundations are quarreling about the money involved in the Memorial Acre project. Nobody knows who’s involved in them. According to Marcus Neustetter, the June 16 Foundation consists of people that were part of 1976 protest movement, local government officials, representatives of the Hector Pieterson Museum, and the council. According to students from the Isaac Morrison High School, the statue of Tsietsi Mashinini is on the school ground because on the Memorial Acre it would be vandalized by youths from White City, an adjacent neighborhood. Accorcing to Brian Mokhele, the statue of Tsietsi should eventually be mounted on the Memorial Acre. It is wrong that the statue is in the school at the moment, because it is not a public school. He wants the statues to depict the massiveness of the force that was coming into Soweto after the protests. According to Brian Mokhele, City Parks, City of Jo’burg, City Lights, and SAPS are making some sort of plan to take the plan back. They want to remove the trees from the Memorial Acre, and redesign the Memorial Acre into a relaxing park, without political content. They want to depoliticize the square. In doing so,they will have their own employment and not use local workforces. According to Brian Mokhele, the community wants to remove the monuments, amphitheater, and sculptures from the Memorial Acre because they do not resemble anything. The sculptures should be depicting the truth of what happened, because the Memorial Acre is a political heritage site. He wants to involve the people that actually participated in the struggle to make the monument so that everyone can enjoy it and get a better understanding of the struggle heritage. Therefore, he proposes collective ideology in which everyone has a say. This would prevent future vandalization of the monument. According to Pat Motsiri, the sculptures must depict the event around June 16, 1976. Like the story of Dr Edelstein, who was pierced by pickaxes, forced into a garbage bin and burned alive. According to Jonas Staal, the Memorial Acre should be destroyed, its elements stacked on pallets, thus forming the Monument for the Distribution of Wealth . According to Mafaisa, his men can do the work quickly. He has about twenty men working under him. (shrink)