THE SAN CODE OF RESEARCH ETHICS

The San peoples of southern Africa have been the object of much academic research over centuries. In recent years, San leaders have become increasingly convinced that most academic research on their communities has been neither requested, nor useful, nor protected in any meaningful way. In many cases dissatisfaction, if not actual harm, has been the result. In 2017, the South African San finally published the San Code of Research Ethics, which requires all researchers intending to engage with San communities to commit to four central values, namely fairness, respect, care and honesty, as well as to comply with a simple process of community approval. The code is the first ethics code developed and launched by an indigenous population in Africa. Key to this achievement were: dedicated San leaders of integrity, supportive NGOs, legal assistance and long-term research collaborations with key individuals who undertook fund-raising and provided strategic support.

The San peoples, widely known as 'first' or 'indigenous' peoples of Southern Africa, have been the object of much academic research over the past centuries. In recent years San leaders have, with increasing confidence, arrived at the conclusion that most academic research on their communities was neither requested, nor useful, nor protected in any meaningful way. In many cases dissatisfaction if not actual harm was the result.
In 2017, the South African San published the San Code of Research Ethics, which requires all researchers intending to engage with San communities to commit to four central values, namely fairness, respect, care and honesty, as well as to comply with a simple process of community approval. The Code was launched as part of the EU-funded TRUST project, which catalysed a global collaborative effort to stop 'ethics dumping', i.e. the application of double standards in research.
The Code has been warmly welcomed by other groups who perceive themselves as being similarly vulnerable to exploitation through research. Other members and representatives of vulnerable groups have requested advice so that they can develop their own, tailor-made research ethics codes. We hope that this storytelling of the San experience will inspire others and support their own developments.

Roger Chennells and Doris Schroeder, December 2018
The publication of this Code has been greeted with unprecedented interest from the international media. The local context must drive efforts. There is no "how to" list that can be produced by the San community and its supporters for easy transplanting to other communities. This report focuses on the trajectory to success of one community, which can hopefully be replicated elsewhere.
This is not an academic publication. It therefore includes the authors' personal views, and photos of the authors and (with permission) those who supported the writing of this report.
Optimistically speaking, it should be much easier to develop sister codes of the San Code by using the San example, for at least two reasons. First, the four values framework used by the San has been applied successfully globally and is therefore ready for application outside of South Africa. 1 Second, discussions between the San and representatives of sex workers from Nairobi -another vulnerable population involved in research -showed significant overlaps of concerns. But it is not necessary to have 25 years experience! The reason 25 years are described here is to provide all background.

THE AUDIENCE FOR THE REPORT
Members of the San community who would like to learn more about the history of the San Code of Research Ethics.
Members of other communities, as well as their supporting NGOs, who believe their community would benefit from a locally driven code of research ethics.
Researchers and others who are generally interested in research ethics codes and community engagement.

International research collaborations
This report is written for three main audiences:

RESPECT
We require respect, not only for individuals but also for the community.
We require respect for our culture, which also includes our history. We have certain sensitivities that are not known by others. Respect is shown when we can input into all research endeavours at all stages so that we can explain these sensitivities.
Respect for our culture includes respect for our relationship with the environment.
Respect for individuals requires the protection of our privacy at all times.
Respect requires that our contribution to research is acknowledged at all times.
Respect requires that promises made by researchers need to be met.
Respectful researchers engage with us in advance of carrying out research. There should be no assumption that San will automatically approve of any research projects that are brought to us.
We have encountered lack of respect in many instances in the past. In Genomics research, our leaders were avoided, and respect was not shown to them. Researchers took photographs of individuals in their homes, of breastfeeding mothers, or of underage children, whilst ignoring our social customs and norms. Bribes or other advantages were offered.
Failure by researchers to meet their promises to provide feedback is an example of disrespect which is encountered frequently.

HONESTY
We require honesty from all those who come to us with research proposals.
We require an open and clear exchange between the researchers and our leaders. The language must be clear, not academic. Complex issues must be carefully and correctly described, not simply assuming the San cannot understand. There must be a totally honest sharing of information.
Open exchange should not patronise the San. Open exchanges implies that an assessment was made of possible harms or problems for the San resulting from the research and that these possible harms are honestly communicated.
Prior informed consent can only be based on honesty in the communications, which needs to be carefully documented. Honesty also means absolute transparency in all aspects of the engagement, including the funding situation, the purpose of the research, and any changes that might occur during the process.
Honesty requires an open and continuous mode of communication between the San and researchers.
We have encountered lack of honesty in many instances in the past.
Researchers have deviated from the stated purpose of research, failed to honour a promise to show the San the research prior to publication, and published a biased paper based upon leading questions given to young San trainees. This lack of honesty caused much damage among the public, and harmed the trust between the collaborating organisation and the San.
Another common lack of honesty is exaggerated claims of the researcher's lack of resources, and thus the researchers' inability inability to provide any benefits at all.

JUSTICE AND FAIRNESS
We require justice and fairness in research.
It is important that the San be meaningfully involved in the proposed studies, which includes learning about the benefits that the participants and the community might expect. These might be largely non-monetary but include co-research opportunities, sharing of skills and research capacity, and roles for translators and research assistants, to give some examples.
Any possible benefits should be discussed with the San, in order to ensure that these benefits do actually return to the community.
As part of justice and fairness the San will try to enforce compliance with any breach of the Code, including through the use of dispute resolution mechanisms.
In extreme cases the listing and publication of unethical researchers in a "black book" might be considered. An institution whose researchers fail to comply with the Code can be refused collaboration in future research. Hence, there will be "consequences" for researchers who fail to comply with the Code.
We have encountered lack of justice and fairness in many instances in the past. These include theft of San traditional knowledge by researchers. At the same time, many companies in South Africa and globally are benefitting from our traditional knowledge in sales of indigenous plant varieties without benefit sharing agreements, proving the need for further compliance measures to ensure fairness.

CARE
Research should be aligned to local needs and improve the lives of San. This means that the research process must be carried out with care for all involved, especially the San community.
The caring part of research must extend to the families of those involved, as well as to the social and physical environment.
Excellence in research is also required, in order for it to be positive and caring for the San. Research that is not up to a high standard might result in bad interactions, which will be lacking in care for the community.
Caring research needs to accept the San people as they are, and take note of the cultural and social requirements of this Code of Ethics.
We have encountered lack of care in many instances in the past. For instance, we were spoken down to, or confused with complicated scientific language, or treated as ignorant. Failing to ensure that something is left behind that improves the lives of the San also represents lack of care.

PROCESS
Researchers need to follow the processes that are set out in our research protocols carefully, in order for this Code of Ethics to work.
The San research protocol that the San Council will manage is an important process that we have decided on, which will set out specific requirements through every step of the research process.
This process starts with a research idea that is collectivelydesigned, through to approval of the project, and subsequent publications.
The San commit to engaging fairly with researchers and manage effectively all stages of the research process, as their resources allow. They also commit to respecting the various local San structures (e.g. Communal Property Association, CPA leaders) in their communications between San leaders and San communities. The fate suffered by the San peoples in Africa is similar to that of many indigenous peoples in other parts of the world. Expansion and conquest firstly by assertive local pastoralist and agriculturalist communities, followed later and with similar devastation by colonial powers, has decimated their former existence. The San history over the past centuries has been one of dispossession, enslavement, cultural extinction and recorded patterns of officially sanctioned genocide. iii The apology famously given by the Australian government iv to the indigenous Aborigine population in 2008, in which the admission is made of the collective harm perpetrated on them and their ancient cultures, has not yet been given in Africa.
For many reasons, including their existence until recent times as hunter-gatherer peoples, and their unique genetic properties as descendants of possibly the oldest form of humankind, the San have found themselves in high demand as research populations.
Modern San leaders faced with increasing societal challenges had no means of discussing their problems with other leaders, of learning about their human rights, or of deliberating ways in which they might legitimately challenge the unwanted interventions from researchers and other outsiders such as media.
In addition, the San world view is generally one of seeking harmony, and avoiding all forms of conflict. Several scholars of conflict resolution have based their principles of good practice on ancient San systems, in which prevention of disputes and reconciliation of interests are deeply ingrained. v The outside world regarded the San, arguably with much justification, as a classic example of a 'vulnerable population', vi lacking the means to organising a collective response to their common interests and concerns.

WIMSA
During the early 1990s, following disparate and uncoordinated efforts by non-government organisations (NGOs) to assist San communities in the different countries, a sustained effort was made by community activists to bring together San leaders to discuss their common issues and problems. Axel Thoma and the late Braam le Roux 6 responded to the significant challenge of bringing together community leaders from remote and far-flung communities, as well as across national boundaries.
In June 1992 the first regional conference, aimed at gathering San leaders of different languages and from different countries, was held in Windhoek for San leaders of Namibia and Botswana, followed by a second meeting in Gaborone in 1993 vii . At both meetings, San communities acknowledged the significance of sharing their common problems and life experiences, and also expressed the joy of discovering that they were part of a larger San family or community.
In early 1995, the Netherlands Development Organisation SNV and the Swedish development organisation DIAKONIA funded a "needs assessment" to be carried out by Axel Thoma and Braam le Roux, in collaboration with San community leaders. These two funding agencies, later to be followed by others, supported the institutional empowerment of the San, and particularly promoted the intention to form a cross-border, regional organisation.
In May 1995 a final regional San development conference was held in Botswana in order to receive the recommendations of the needs assessment, and to determine the road ahead. For the first time, South African San leaders were invited. The conference on "Self-development and Resettlement" was held in D'kar, Botswana, and 54 San leaders from Namibia, Botswana and South Africa attended.
After debate, Thoma, le Roux and San leaders were mandated to take the recommended action towards building San unity with start-up funds from Swedish DIAKONIA. In the words of Axel Thoma, "This was the start of the vision to coordinate the advocacy work of San leaders in the entire region under one organisation." viii In January 1996, WIMSA (the Working Group for Indigenous Minorities in Southern Africa) was formed in Windhoek, Namibia. Windhoek was chosen due to its relatively central location, and good transport networks for all San populations.
At the time, the governments of Botswana and Namibia were not supportive of exclusive ethnic groupings, and the word "San" was not permitted in public discourse in either country. Hence the name WIMSA was chosen. ix WIMSA's primary objective, as stated in its first constitution, was the protection of the rights of all San peoples in Southern Africa. The first board of WIMSA initially consisted of equal numbers of representatives from San community organisations in Namibia, Botswana and South Africa, with one representative from Angola being nominated in 1998.
The first Chairperson of WIMSA was Kippi George, from the Khwe San. On his death he was followed in 1997 by Kxau Moses ŧoma of the Ju/hoansi. Axel Thoma became the first Coordinator of WIMSA and held the position for ten years.
The first board meeting of WIMSA was held on 30 January 1996 in South Africa, and a policy was adopted for rotating board meetings between the three member countries (where possible) to prevent perceptions of bias towards any country. In the words of the late Mario Mahongo, "for the first time we were meeting San leaders from the whole region, and we realised that this new organisation WIMSA could really help our people." WIMSA functioned effectively as a regional organisation from its inception in 1996 until approximately 2016. The early successes of this important San organisation in raising awareness and promoting advocacy amongst the San cannot be overstated, and are captured in its annual reports, which were provided to the institutional funders that supported WIMSA's objectives over two decades. WIMSA's Annual report on activities April 2003

SOUTH AFRICAN SAN INSTITUTE
The South African San Institute (SASI) was formed in 1996 and initially took the form of a dedicated San service NGO. SASI's original mission was to assist the !Khomani San with their restitution land claim in the Kalahari. This was completed successfully in 1999, but SASI continued to be active.
SASI also supported the !Xun and Khwe San communities, who were relocated to South Africa from Namibia after termination of the "bush wars" in 1990, and settled in a temporary army camp near Kimberley, where SASI is based. The communities' first needs were for assistance in relation to housing and other social problems arising from their exceedingly disruptive and war-torn history, where they were caught in the cross-fire between the Apartheid government of South Africa and freedom fighters in Angola and Namibia.
SASI's Board is constituted equally of San leaders and other Trustees. Since its inception, the Board has guided the NGO through periods of successes as well as through subsequent lean periods where funding was limited and personnel had to be laid off. SASI employed a legal advisor (Roger Chennells) as well as anthropologists and other consultants who were instrumental in many of the South African successes listed below, including the !Khomani land claim, the !Xun and Khwe resettlements, and benefit sharing cases involving medicinal plants such as Hoodia, Sceletium, Buchu and Rooibos. San institutional needs in South Africa were varied, but particularly pressing at the time were:

SASI played a key role in development of the San
• Land claims following legislation brought in by the Mandela government. • Benefit sharing agreements in relation to medicinal plants, following South Africa's adoption of the Convention on Biological Diversity with its protection mechanisms for traditional knowledge. • Protection from exploitation in research and loss of cultural heritage.
With ongoing legal and administrative support from SASI, the South African San Council has grown from strength to strength, with one of its greatest successes being representation of the traditional knowledge (TK) rights of the San for various medicinal plant varieties.
In the words of Leana Snyders, the current Director of the San Council, "Our relationship with SASI has helped increase our capacity to understand the law, and also to represent our people. With the legal knowledge gained from negotiating benefit sharing agreements resulting from our traditional knowledge, the San have become acknowledged leaders in this field".

!KHWA TTU: THE SAN CULTURE AND EDUCATION CENTRE
In the decades following the formation of WIMSA, certain topics emerged as clear priorities amongst San communities: • Access to land • Benefit sharing for traditional knowledge • Protection of heritage and culture The love and indeed passion for culture emerged as a powerful theme that united and defined the disparate San peoples, and made them talk animatedly into the night at workshops. Despite their material disempowerment in the modern world, and despite the difficulties they experienced in engaging with the modern world, their culture remained to them a unique and precious commodity, in urgent need of protection. During meetings about heritage, passionate stories were shared of how they had allowed their heritage rights to be abused. Of how researchers had taken medicinal knowledge, stories, songs and images under various pretexts, resulting in unacknowledged films, books, medicines and research papers being published in faraway lands.
Of how photographs had been taken of San hunters at the roadside, which ended up as glossy postcards or photos in Western magazines. And of how books of San stories and myths had been researched and published without acknowledgement of the original storytellers. Teas, medicines and natural remedies based on San plant knowledge became commercial successes, whilst the San languished in poverty.
The need for protection of heritage and culture thus became more and more urgent for San communities, requiring a collective response.
When San delegates at a WIMSA annual general meeting in 1997 xiv decided that as part of their cultural revival, and in response to decades of disempowerment by others in the research and tourism industries, they should seek assistance for the creation of their own cultural and tourism training centre, a foundation stone of San heritage revival was laid.
A Swiss anthropologist and philanthropist, Irene Staehelin, had previously indicated an interest in assisting and working with the San if they ever decided to commit to a long-term culture and training It promises to be a museum of world class standard, and another significant milestone in this long-term project. A sustained drive to maintain the involvement of past trainees/alumni, including regular outreach initiatives with the San communities, strives to preserve and improve a sense of pride and investment in this joint venture heritage project. In the words of Joram /Useb, who works for !Khwattu, "Khwattu has become a project where San trainees feel at home, whilst they learn how to engage with tourism and the modern world." A few months before the museum was opened, !Khwattu Kids won a rap competition to explain the four values of the San Code of Research Ethics (fairness, respect, care and honesty) in music.

SUCCESSES AND CHALLENGES FOR THE SAN REGIONAL INSTITUTIONS
Above -!Khwa ttu workshop, 2014, with Zembrin colleagues and Ministry of Science and Technology involvement, ProGRess project The establishment of San regional institutions has transformed the ways in which the San from different communities are able to work together. Regional networks have enabled major successes and these in turn have strengthened the San leaders, and the willingness to tackle possible exploitation wherever it is encountered.

MAJOR SUCCESSES OF THE REGIONAL INSTITUTIONS
As is stated in many conventions and statutes xvi relating to the rights of indigenous peoples, heritage and culture are inextricably linked to, and dependent on, access to traditional land. Culture, which includes the knowledge systems, language, songs and stories relating to their landscape that are passed down over centuries and even millennia, is deeply rooted in traditional lands. It was therefore a particular success when the South African San won a land claim.

Land claim in South Africa
Access to land and the longing for tenure security on traditional land was shared by all members of the regional WIMSA organisations as a powerful prerequisite for stability. Access to land is one of the rights regarded by international instruments 7 as being central to indigenous peoples' empowerment.
The words and names the San have for landmarks, medicinal plants and animals, all relate to specific traditional land, and wither away when their access to that land is compromised. The removal of San from their traditional lands by more assertive external communities over the past centuries, combined with the challenges of modern society, are seen as the most powerful factors threatening San culture and livelihoods. In South Africa, land claims were won between 1999 and 2002; in Namibia and Botswana, access to and ownership of land is more complex, and remains as a permanent aspiration.
After the release of Nelson Mandela in 1990, legislation was drafted in South Africa aimed at undoing the Apartheid state that had reigned for close to half a century. The Restitution of Land Act of 1994 was designed to return land to claimants who had lost land as a result of one of Apartheid's race-based policies.
The San, the first inhabitants of South Africa for millennia prior to later invasions, had by then been reduced to a few scattered clans in the Northern Cape living on the outskirts of villages, in dire poverty. Roger Chennells spent four years from 1992 tracing San members of the !Khomani,/Auni and N/Amani language groups, under the charismatic leadership of clan head Dawid Kruiper. Many of Kruiper's clan had been forcibly removed from the (then) Kalahari Gemsbok National Park between 1931 and 1965, and had spent the past decades moving and living from hand to mouth.
By 1996 it was clear that these San people, the last surviving indigenous San of South Africa, had a powerful legal right to launch a land claim. The NGO SASI was formed in the same year to provide the newly re-forming San community with both legal and socio-linguistic support (under the leadership of Nigel Crawhall). The SASI legal program held a large number of meetings for educating San about their legal rights, and developing the legal structures necessary to pursue the land claim. The socio-linguistic program explored the language and cultural aspects of this San revival.
By 1997 no less than 20 fluent speakers of the N/uu language had been located in the Kalahari, a remarkable occurrence given that this language had previously been declared as officially "extinct".
During 1996 SASI also began to provide support to two further San communities, the !Xun and the Khwe, as noted earlier. The !Xun and the Khwe were originally from Namibia and Angola, and had been forced to join the South African forces during the "bush wars". They were evacuated rapidly to South Africa following Namibia's independence in 1992. These two immigrant San communities were settled in a tented camp outside Kimberley and were in need of a wide range of social and legal services as they adapted to changed circumstances.

MAJOR CHALLENGES FOR THE REGIONAL INSTITUTIONS xxi
Many tangible advantages have sprung from coordinated regional efforts but the establishment of cooperative relationships and institutions has not been without its challenges.
Following its inception, WIMSA proceeded over the next fifteen years to coordinate the collective efforts of the San in Namibia, Botswana and South Africa towards 'empowerment', a term used by the European-based funders who supported the process. The term 'empowerment' could be understood as an increasing capacity and power to survive or thrive in a fast changing world. However, this term also encompasses a subtler connotation of 'development' from a state of disempowerment to empowerment and in this instance, 'development' implies acceptance of a Western democratic model.
Western assumptions about development were incorporated as both overt and implied conditions of accepting funding support. European funders supported training programs and workshops based upon specific assumptions about relationships between men and women, as well as between the San people and modern development. As stated by Joram /Useb: It was difficult to communicate to funders from Europe the complexity of the world of San communities, who lived in conditions of deep poverty and isolation.
For example, as a condition and requirement of funding support, it was often assumed by funders: • that the most pressing empowerment needs of the San were for money, jobs and access to the opportunities and amenities of the modern world. This assumed that they needed to be trained to fit into society, rather than to contribute to their own communities.
• that modern democratic forms of representation should be instituted whereby leaders were formally elected, despite the fact that most communities had never experienced elections. San persons who were elected representatives thus found themselves immediately catapulted into previously unimagined positions of power and status, based purely upon their elected positions. Such status elevation was problematic to egalitarian San societies.
• that San women should (within strict timeframes) form 50% of all leadership structures. They were expected to undertake leadership positions in order to show gender equity, despite strong and ancient San cultural prohibitions against women speaking out in public. A married woman elected to a committee might thus, despite strong cultural taboos, be expected to travel without her husband to attend far-away workshops, with resultant anxiety all round; • that strict time lines and outputs were appropriate for San projects, notwithstanding the San need for consultative and unrushed decision-making processes.
San Councils, as members of WIMSA, were elected to represent the local San communities in Namibia, Botswana and South Africa. They were required to follow the democratic processes prescribed by Western funders, which were new to San communities, as well as fraught with anomalies and cultural tensions. Elections resulted in outcomes that were different from those that might have resulted from less Western-based processes. Elected leaders were in some cases those who were able to lobby for support rather than more traditional leaders. Leadership was new to them, as was the exposure to new forms of temptations provided by money, freedom and mobility. Elected leaders were immediately hoisted to a relatively higher position of wealth and status compared to their peers and this often resulted in jealousy, confusion, and a longing by some in the communities for earlier, simpler, more predictable times.

Whilst the imposition of Western governance policies and democratic structures on the San by well-meaning European funders was simply regarded as being 'best practice' for development funding, there was scant cognisance of the difficulties the conditions attached to the funding might cause in communities that had for millennia embraced sheltered, egalitarian and loose governance systems.
At the same time, the International Indigenous Peoples' movement was benefitting from the first United Nations Decade of Indigenous Peoples xxii , and WIMSA was determined to become part of the international movement. Each year between 1998 and 2008 WIMSA coordinated the selection and training of leaders to attend the United Nations Working Group of Indigenous Peoples in Geneva, where they mingled with other similar indigenous and vulnerable peoples, and contributed towards the development of the Universal Declaration on the Rights of Indigenous Peoples (UNDRIP), which was finally adopted in 2007. Leaders who became exposed to the debates and realms of the United Nations Institutions in Geneva returned home to impoverished communities, and to the vast challenges facing their peoples.
A major benefit of the formation of San institutions was networking. Within a relatively short period of time, and with a radical learning curve being imposed on their leaders, San communities were benefitting from being connected with each other and the outside world by a functioning network of organisations. At the same time, alongside these benefits came challenges such as the newly awakened politicisation of their structures, the emergence of materialism, disputes over positions of power, jealousy, and envy of others. In many cases the sheer difficulty of engaging successfully with the outside world, or the pressure of jealousy by others, led to leaders resigning. Meanwhile, widespread poverty persisted, with feelings of helplessness, and the breakdown of social relationships within San communities.
During the first two decades of institution-building, San leaders were reminded repeatedly by their communities about the cultural disempowerment that was still happening in front of their eyes. In other words, despite many significant milestones and achievements, problems at the community level remained serious. In the eyes of the world, the San had transformed from their initial state of relative disempowerment in 1996, to the assertive and organised indigenous community which in March 2017 published the San Code of Research Ethics. This undoubted achievement was praised by many indigenous and other organisations, who requested guidance so that they might emulate the San's progress towards developing their own research ethics codes. Some imagined that the process might be straightforward, and achievable by simply following some clear rules and suggestions. However, the reality is far more complex. In the less than straight trajectory of San developments, significant mistakes were made, and the leaders continuously overcame setbacks in their struggle towards the relatively strong position that they occupy today. We will return to essential elements in overcoming these setbacks later, after looking at the international research dimension.

BESHA -GENOMICS AND BENEFIT SHARING 2004-2005
Funded by the European Commission, the aim of BESHA was to work towards a programme of 'benefit sharing capacity building' for low and middle income countries (LMICs). A specific focus was on providing an intercultural perspective on the concepts of 'community' and 'benefits'.

Doris Schroeder invited two San leaders, Andries
Steenkamp and Collin Louw, to the main academic workshop in Cape Town. The presentation by the San leaders on benefit sharing drew the audience's attention like no other. Not normally part of academic workshops, what Andries Steenkamp and Collin Louw had to say was spellbinding. The idea that vulnerable populations cannot speak for themselves, as Doris had been told by colleagues, died a quick death.
It was clear that the San had achieved significant successes (like the land claim and Hoodia agreement) with legal and NGO support and that the community had traditional leaders of integrity.

PIC -PRIOR INFORMED CONSENT AND BENEFIT SHARING, 2006-2008
The Wellcome Trust funded PIC project, later renamed to San-!Khoba (San word for Hoodia), investigated the most famous benefit sharing case to date, the Hoodia case, which was also covered in the earlier BBC documentary.
Three main achievements can be recorded from the project that are directly relevant to the San:

Extension of the network to include a renowned
Australian indigenous colleague, who was named an 'unsung hero of the 20th century' by Kofi Annan: Jack Beetson. Jack fed his valuable views on benefit sharing into the San discussions.

A major workshop in the Kalahari bringing together
San leaders and representatives from South Africa, Botswana and Namibia in an effort to develop principles for sharing Hoodia Trust funds. Importantly, the principles of fairness and respect, two of the four pillars of the San Code of Research Ethics, were first emphasized at this event.
3. An academic book with high interest internationally and significant praise as in Box 1, linking the Hoodia case to international debates on the Nagoya Protocol to the Convention on Biological Diversity.

Indigenous Peoples, Consent and Benefit Sharing-Lessons from the San-Hoodia Case.
Royalties from the book go to WIMSA.

GENBENEFIT -GENOMICS AND BENEFIT SHARING WITH DEVELOPING COUNTRIES -FROM BIODIVERSITY TO HUMAN GENOMICS, 2006-2010
Interest in the benefit sharing experience of the San was considerable and hence it was possible to obtain further EU funding. GenBenefit expanded the work with the San to include another vulnerable research population, sex workers from informal settlements in Nairobi. This was possible thanks to co-operation with Prof. In 2017, thanks to the TRUST project, the San and sex worker representatives finally met in person to exchange experiences. A short video records this meeting here: The value of honesty as an essential element in an ethics code of conduct was discussed at length at the joint meeting, as recorded in the video.
The following main achievements can be recorded from the project, as relevant to the San:

Consultation and training meeting on Pre-and
Post-Study Obligations in Biomedical Research at the invitation of the Kenyan Ministry of Medical Services. This deepened the collaboration with two vulnerable populations (San, sex workers), which later led to the TRUST project.

Input into ongoing benefit sharing negotiations between the San and Hoodia farmers.
3. Input into Nagoya Protocol discussions through close collaboration with Protocol Co-Chairs and a UNEP publication. One of the two Co-Chairs, Tim Hodges, joined a mission to !Khwa ttu and a consultative meeting in India.

EQUITABLE ACCESS TO HUMAN GENETIC RESOURCES -BALANCING BENEFIT SHARING AND UNDUE INDUCEMENT 2011-2014
Between two major EU-funded projects (GenBenefit and ProGReSS), Roger Chennells undertook PhD research focussing on a major objection to benefit sharing, namely that benefits provided to research stakeholders could form undue inducements to participate. The funding was provided by the Wellcome Trust, Doris Schroeder was the PhD supervisor.
The choice of the topic was inspired directly by the difficulties experienced by San leaders following a highly publicised genomic research project carried out on San individuals in Namibia, where publication took place without recognition of or permission obtained from the San leadership.
The details of the case can be read by clicking here. https://link.springer.com/chapter/10.1007/978-3-319-64731-9_3 The PhD study focussed on research involving human biological resources, in view of the increasing demand for the unique and valuable DNA of indigenous peoples. In particular, focus was placed on the question whether and under what terms the notion of benefit sharing, adopted by the Convention for Biological Diversity, could and should be applicable for the use of human DNA.
Strongest and most strident of objections to benefit sharing with humans involved in genetic research was the fear of undue inducement, namely the concern that individuals and groups from low and middle income countries might be tempted by benefits into taking part in harmful or inappropriate research. The PhD study explored exploitation generally, as well as undue inducement and coercion in particular, in assessing whether this concern was justified. Notions of equity and fairness were explored, leading to the conclusion that indigenous peoples should not be precluded by such concerns from receiving appropriate benefits.
In order to achieve fair treatment, or a fair deal in research, respectful engagement with the indigenous leadership is required for any research to be regarded as ethically responsible. These conclusions supported the final development by the San leadership of the San Code of Research Ethics.

PROGRESS -PROMOTING GLOBAL RESPONSIBLE RESEARCH & SOCIAL AND SCIENTIFIC INNOVATION 2013-2016
In 2013, SASI was ready to receive EU-funding in its own right, and thanks to Meryl-Joy Schippers, SASI's then Director, they were able to join this major research project as an official partner. ProGReSS was an EU-funded project on the topic of global responsible research and innovation.
The following main achievements can be recorded from the project as relevant to the San:

TRUST -CREATING AND ENHANCING TRUSTWORTHY, RESPONSIBLE AND EQUITABLE PARTNERSHIPS 2015-2018
The EU-funded project that has been most successful in promoting San interests to date is TRUST, the project which launched the San Code of Research Ethics. The main goal of the TRUST project is to catalyse a global collaborative effort to improve adherence to high ethical standards in research around the world, in other words, to stop double standards in research. What is not allowed in a high income setting should not generally take place in a resource-poor region. The following main achievements can be recorded from the project as relevant to the San, in addition to the San Code, which will be described in more detail below: In summary, five international research projects and one PhD have funded activities which have enabled San representatives to deal with the research or intellectual property issues of the day, whilst also feeding in directly to the research agenda. The broader issue of the San speaking for themselves, rather than having their views represented by others, was a strong point from the start of the collaboration with Doris Schroeder's research team. As Mario Mahongo said at a TRUST workshop in 2017:

What San leaders have felt about academic research in their communities, namely that it was neither requested, nor useful, nor protected in any
I don't want researchers to see us as museums who cannot speak for themselves and who don't expect something in return, as humans we need support.
Each successive project enabled productive workshops to be held, at which the San's rights were further debated, and where the outcomes were not only used by the San in practical cases, but also by the project to publish and disseminate.
Finally, the TRUST project united the efforts of many years to tackle the challenge of how unwanted research could be controlled. This latter focus resulted in the San revising, improving and launching the San Code of Research Ethics in March 2017. Without the collaborative support of international research partners, it is doubtful that the San Code of Research Ethics would have emerged.

ESSENTIAL INGREDIENTS FOR SUCCESS
Above -Buchu plant, Cedarberg Mountains (Photograph Amy Azra Dean) The development of the San Code of Research Ethics rests upon the aforementioned activities at both regional and international level. Each of these undertakings helped to shape the landscape from which the Code emerged in 2017. Additionally, the vision of the Code may never have been realised without various essential ingredients for success.

It is perhaps a truism that collective progress is impossible without leaders of vision and integrity.
When the San began their process of institutional development in 1996, they were fortunate to have a group of pioneering leaders who drove and supported the vision to end the isolation of the past and to enter the organisational modern world.

Andries Steenkamp, Nairobi, May 2016
We are not going to attempt a detailed account of those leaders who distinguished themselves over the period, partially out of concern about leaving people out, but also out of acknowledgement that the leaders themselves were always reliant upon the support of dedicated allies and colleagues. It can nevertheless be stated that the San were blessed during this period with strong leaders, some of whom are still active, who had the wisdom to support change, to engender consensus amongst sometimes differing opinions, and the ability to retain the confidence and trust of their people.
One can be forgiven however for singling out the following leaders, who died prematurely whilst dedicated to the process of empowering their people: Modern San leaders have the precedent of the authentic and principled voices of the leaders who preceded them, providing them with a strongly perceived responsibility to continue the vision of San collective empowerment.
These leaders rose above their peers for many reasons. They were strong, and able to take difficult decisions, without losing an element of softness and humanity. Each were regarded as honest and dedicated to their people, rather than to their immediate families and clans. They were respected both by their own communities as well as by outsiders for their intelligence, integrity, and wisdom. These factors alone made them unique, and like Mandela, they are constantly referred to as icons of leadership.

SUPPORTIVE NGOS
The San benefitted from of a number of dedicated NGOs (like WIMSA and SASI), who from the mid-1980s helped to mobilise the widespread communities. The relationship between NGOs and the community they aim to represent is not always without tension. However, where NGO partnerships existed, San communities have thrived.
SASI, which prides itself on supporting San peoples in South Africa since its inception in 1996, has regularly reviewed and renegotiated its relationship with the San Council, in order that the roles, tasks and purposes of each is made clear, and that no form of domination or other perceived unfairness persists.
What is often not publicly recorded is the fact that activist NGOs are frequently blessed with dedicated individuals whose energy and commitment, albeit behind the scenes, are every bit as important as the San leaders that they support. SASI is fortunate to have such a dedicated and selfless Director. Hennie Swart, Director of SASI, has worked with San peoples since 1990, and is a tireless, humble, dedicated, San support professional.

LEGAL SUPPORT
Many of the important steps undertaken along the path of community empowerment require legal support or intervention. Formation of constitutions, leases, basic legal documents underpinning salaried appointments, drafting of basic agreements with government, funders, and other external actors all require the services of a lawyer to protect the San's interests.
WIMSA and SASI have, from the outset, retained the services of an in-house lawyer (Roger Chennells), which has paved the way over tricky steps. In addition to basic institutional legal support, the most visible advocacy successes of the San were all based upon close collaboration with a legal advisor.
San policy interventions at the United Nations, land claims, and successful San claims for intellectual property rights related to their traditional knowledge (for Hoodia, Buchu, Sceletium, Rooibos etc), which raised the international profile of the San as indigenous peoples, all required committed legal support. This was made available mostly via SASI.
The prohibitive cost of standard commercial lawyers is a well-known deterrent to obtaining legal advice. In addition, utilizing lawyers who do not have knowledge of the ethos and needs of the community can lead to expensive mistakes or misunderstandings. It is suggested that where possible, a long-term relationship with one or more lawyers who are not only committed and competent, but also prepared to represent the community legally on a 'pro bono' or 'non-commercial' basis, is a significant advantage to an indigenous community. Doris Schroeder, Roger Chennells, Brussels 2016GenBenefit project, London 2006

Many academics and NGO members are accustomed to a proliferation of workshops.
One could say that invariably the same people attend a range of workshops led by consultants, appreciate a good meal, and leave without any tangible or lasting benefits at all.
This was not the case with the many San workshops we took part in. Workshop titles have included education, project management, small-stock farming, job creation, empowerment, life skills, leadership, and skills development, as well as topics such as traditional knowledge protection, heritage, benefit sharing intellectual property and the like. Were these a waste of funders' money? No.
In assessing the value of these workshops, a more positive view has been observed, namely that all participants were invariably exposed to new ways of thinking, and certainly did benefit. There is much anecdotal evidence of individuals who later reported that their thinking, and indeed sometimes their lives, were forever altered by some or other insight gained at a workshop. Such an outcome is surely an indicator of capacity that has been built.
The San development programmes conducted by WIMSA, SASI and the San Councils held such capacity building workshops on a range of topics. In addition, the research projects funded by the European Commission and the Wellcome Trust added more. There is no doubt that significant numbers of attendees emerged from these workshops both inspired and enlightened, later joining San organisations or proceeding in other ways to contribute towards San advancement. From being a disempowered and unorganised community over twenty years ago, the San now run their own meetings, manage their own negotiations, and own and manage their own organisations. Their capacity has been built both individually and collectively, by a process which included all of the struggles, challenges and workshops that they attended over the years.

RELATIONSHIPS OF TRUST
For trust to be formed, leaders need to engage with the outside world in a balanced manner which enables development of this priceless commodity. Leaders of poor communities facing the world of government, research academics (local and international) and other business entities might be tempted by circumstances to become overly ingratiating, aggressive, or pleading in order to secure some or other advantage. These approaches might succeed in the short term, but fail to lead to authentic human connections, which in turn are a pre-requisite for more enriching and beneficial long term relationships. For example the long-term WIMSA partnership with the Ubuntu Foundation, in developing the !Khwa ttu training and education centre, was built upon strong and personal trust relationships.
The San leadership, via the South African San Council, have acquired and maintained an approach which was open to forging authentic human relationships with potential partners and allies. Every project meeting or negotiation was regarded as an opportunity to meet a certain person, who might prove him or herself to be mutually open to a relationship of trust. Even disputes were regarded as opportunities to get to know the individuals opposing them, and where possible, to convey the fact that San leaders were both accessible as humans, and also worthy of trust.
Because it is easier to extol the virtues of deceased leaders, Andries Steenkamp of the !Khomani San and Mario Mahongo of the !Xun San, both former chairpersons of the South African San Council, can be singled out as such leaders. Not only was the famous San humour seldom far from the surface, but they exuded an air of confidence and open curiosity, quick to understand and appreciate the persons across the table, and slow to take personal offence. Their personal integrity shone through, and the trust that they generated in others translated into untold benefits for the San.
Their approach ensured that the San Council was highly respected in South Africa, as well as supported by all parties that it came into contact with. In addition, the relationships of trust developed with international researchers contributed towards long-term relationships, and over a decade of mutually beneficial interaction with European Union and Wellcome Trust-funded research and policy projects. During this important workshop, the San developed a range of general principles that applied to their own community, which had as their purpose to ensure that they would never again be subjected to the harm and disempowerment of unethical research interventions. These principles were as follows:

DRAFTING THE SAN CODE OF RESEARCH ETHICS
I. Respect. To the environment, to San leaders and individuals, to cultural values.

II. Honesty, integrity, honour between all partners.
III. Cultural and spiritual values must be fully honoured and respected in all research and media projects.
IV. The right formal process, application and approval, should be followed to protect communities in research.

V.
A prioritization of processes should be identified and followed (i.e. first apply, engage, debate, get approval, report back, etc.)

VI.
Informed consent is central to all research.

VII.
Genetics samples should only be used for the purpose stated in the application and research contract. For further research on the sample, further consent must be sought.

VIII.
Researchers should not enter a community without being guided and led by members of the community itself.
IX. Mutual benefits should be ensured where possible. Both researcher and community should benefit from the interaction.

PETRUS VAALBOOI
"Respect for animals and birds": in the San cosmology should rather be "Respect for the entire creation, seen and unseen, above and below". The San grew up with 'respect' as being at the centre of how we should live; respect for all beings.

ZEKA SHIWARRA
The San have given away too much for too long, it is time to take control of our heritage. This Code of Reseaarch Ethics attached to a contract is a strong way to do this.

ANDRIES STEENKAMP
The "entry by the front door, or by the window" analogy: the Code of Research Ethics describes how researchers may get access to the community and be welcomed as guests, through the front door, instead of acting like thieves passing through the window. AND THE REVISIONS TO THE WIMSA RESEARCH  AND MEDIA CONTRACT, VIEWS FROM THE  DELEGATES AT THE WORKSHOP WERE FILMED: OSIA MAKUMBU Some groups, like the elder members of the community, are even more vulnerable when it comes to be involved in a research study. We need this contract to protect them.

HIDEE MAASDORP
The hierarchy of the entire process must be efficiently followed in order for the contracts to achieve their purpose. Approach, submission of application, approval, feedback and follow-up must all take place. Whilst the San Council is the body to control the contracts, Prior Informed Consent must still be ensured from individuals in the community.

LUCE STEENKAMP
The research contract must have clear guidelines, the shoulds and shouldn'ts, so we can protect our communities.

DIRK PIENAAR
This Code will ensure that when people enter our community they know what to do.

JAFTA KAPUNDA
By following the contract the researcher is already showing 'respect' to the community.

REVEREND MARIO MAHONGO
We need to remember that research has helped us a lot. Without research, we would be in a far worse place. So we should not put research off, only manage it.

LEANA SNYDERS
The review panel is an important component of the research contract. We will need training and help to form such a panel of San, as well as some experts.

DORIS SCHROEDER
The WIMSA research contract had a very good preamble. We should consider reviving the preamble, which explains why the contract is necessary for vulnerable people. The four core values were going to be supported by a fifth value, which the San delegates deemed essential, namely proper process. In small groups the key points of each value were written out in greater detail.
The results of the 3rd workshop were then given to colleagues who undertook further work. In December 2016, Roger Chennells worked on the Code from a legal perspective. In January 2017, Doris Schroeder worked on the Code from an ethical perspective.
The subsequent draft, which had been edited from both a legal and an ethical perspective, was then presented to the San leadership for adoption. Further minor changes were made until the Code was unanimously adopted and declared ready to be launched by the San leadership.

RECORDINGS WITH A STEENKAMP AND M MAHONGO
It is no exaggeration to say that Andries Steenkamp and Mario Mahongo were the two San leaders who contributed most to the San Code of Research Ethics.
Tragically, Andries could not see it launched, and the untimely death of Mario less than a year after the Code's launch has robbed the San of these two outstanding leaders. The loss is unimaginable for the community and the wider networks. The San Council, with Leana Snyders as the experienced Director, is aware of its responsibility to continue the work begun by these two visionary San leaders.

LAST CONVERSATION RECORDING WITH ANDRIES STEENKAMP
In June 2016, Doris Schroeder, Roger Chennells and Andries Steenkamp recorded audio messages, which were meant to start a conversation about more than 10 years of working together. The photo above was taken after the recordings. Two months later, Andries died of a preventable disease. His recording is transcribed below. Recorded in Afrikaans, and translated into English.
My experience is that many people have come and gone with research in our community, and not all people engage with us in the same way. In order to explain this, for example when a person meets with me for the purpose of doing research, whether from overseas or local, I expect to be able to develop a relationship of trust which enables a long term working relationship.
When we trust one another, and we have a relationship of trust, then we are able to work better, and we can also bring others in to work with us, within that relationship of collaboration and trust. So the best thing is you come and make sure you do the right thing and to ask the right questions. And the right questions will help you AND me to understand each other. And that is the way I will work with the North.

LAST RECORDED TRUST CLIP OF REVEREND MARIO MAHONGO
In May 2018, Reverend Mario Mahongo was meant to travel to Stockholm to introduce the San Code of Research Ethics to a high-profile UN audience together with Doris Schroeder. Two days before flying to Europe, he tragically died in a fatal car accident. His last recorded clip can be seen here:

OUTLOOK
Judging from the number of requests the San Council and the authors of this report receive to assist other communities to develop their own ethics codes, the San Code of Research Ethics is regarded as a success that warrants replication. Whilst this is true, there are still hurdles that need to be overcome and questions to be answered.

TRUST team at the San Code of Research Ethics Launch in Cape Town, March 2017
Why do some researchers still come into the San community through the window, like thieves? For instance, are they not aware of the community structures? Do they not trust the structures? Is there intent to avoid community approval?

ROGER CHENNELLS
Dr Roger Chennells is the Founding Partner of Chennells Albertyn Attorneys. As an attorney in private practice since 1980, Roger has practiced in a wide legal field ranging from labour, environmental, human rights to commercial and constitutional law. In the last 25 years, he dedicated much of his work to representing the interests of the San community.

DORIS SCHROEDER
Prof. Doris Schroeder is the Director of the Centre for Professional Ethics at UCLan, UK. She is Europe's leading ethics specialist on benefit sharing and has co-ordinated large research projects on global justice. She started collaborating with the San in 2003 and she is the Leader of the TRUST project.

ANDRIES STEENKAMP
Andries Steenkamp, who passed away in 2016, was the Chairman of the South African San Council and a leading figure amongst the Khomani San in Andriesvale.

COLLIN LOUW
Collin Louw is the Chairman of the South African San Council with specialist interest in cultural heritage and the protection of intellectual property.

ZEKA SHIWARRA
Zeka Shiwarra is a San leader of the Khwe people and the Deputy Chairman of the South African San Council.

LEANA SNYDERS
Leana Snyders is the Director of the South African San Council and also its specialist on the San Code of Research Ethics. She has promoted the Code widely, nationally and internationally.

HENNIE SWART
Hennie Swart is the Director of the South African San Institute and has worked in education and training roles with the San for the last 25 years.

AXEL THOMA
Axel Thoma is a German development worker who successfully led efforts to create WIMSA, the first organisation, which brought San leaders from several countries into contact. He was also WIMSA's first Co-ordinator.

JULIA DAMMANN
Julia Dammann is an anthropologist who works for the South African San Institute and who led website and Twitter efforts for the TRUST project.

JULIE COOK
Julie Cook is a professional editor and also a Research Fellow for the Centre for Professional Ethics, UCLan UK. She has been contributing to and editing work on San issues since 2005.