Introduction
Summary of the Event
Takeaways, Lessons, and Way Forward
Team
The Tanzanian Society of Human Genetics (TSHG) was formally inaugurated in 2019 to coordinate activities related to human genetics research and its application in Tanzania. The main objective of the society is to foster the generation of knowledge and recommendations for the diagnosis, treatment, and management of genetic disorders, thereby contributing to the promotion of human health in Tanzania and beyond.
TSHG holds annual events that bring together scientists and other stakeholders in the field of human genetics to share ideas, challenges, and best practices. In 2020, TSHG hosted a virtual summit under the theme “Human genetics and genomics in Tanzania: Implementing advocacy and public engagement.” The symposium aimed at creating awareness and bridging the gap between human genetics research and application through public engagement and advocacy.
As part of the program, TSHG organized a pre-symposium workshop targeting current and aspiring early-career researchers (ECRs) in human genetics in Tanzania. The workshop sought to introduce participants to the concepts of public engagement and advocacy in human genetics research, while also strengthening their scientific communication skills.
The pre-symposium Youth in Genetics Forum attracted 22 participants, including facilitators. The session began with opening remarks by Dr. Siana Nkya, who introduced the participants to TSHG, its origins, its 2019 inauguration, and its ongoing activities. This was followed by a scientific talk by Mohamed Zahir, who explored the potential applications of human genetics knowledge and research within the African context. Dr. Juma Hussein later conducted a session on how to design and present a scientific poster to a non-scientific audience. The activities were moderated and hosted by Aneth David.
On the 12th, the annual symposium officially commenced, bringing together 16 participants. The program featured a keynote address, a scientific presentation, a session on the ethical-legal aspects of human genetics research, and a testimony from a patient. Dr. Samson Kilaza opened with a presentation on the role of the human microbiome in health and advocacy. This was followed by Dr. Syntia Nchangwi, who discussed the ethical and legal issues surrounding human health research. Ms. Arafa Said, a sickle cell patient, shared her personal experience, providing the patient’s perspective on genetic diseases.
The highlight of the symposium was a keynote lecture by Prof. Lucio Luzzato titled “The Globin Genes, Genetics and Genomics.” His talk included an in-depth review of the history of sickle cell research. The event concluded with closing remarks by Dr. Siana Nkya. Throughout the sessions, participants actively engaged with presenters through direct interactions and via the chat platform.
The symposium also featured a scientific poster competition. Out of the two posters submitted via Twitter, only one met the requirements. The winner, Mr. Moshi Shaban Moshi, was awarded a 2021 TSHG diary, a first-place certificate, and had his poster featured on TSHG’s social media platforms, as well as in the upcoming 2021 newsletter.
The symposium was a success, but several challenges were noted. These included limited teamwork, particularly as some junior members were unavailable or responded late when needed. Communication gaps were also observed between the executive members and the broader team. In addition, funding constraints posed significant challenges. Despite a good number of applications, only a few participants managed to attend until the end of the event.
The TSHG 2020 Symposium was led by Aneth David, who oversaw the entire process from the development of the concept note and proposal through to implementation. The communications team played a critical role in supporting the planning and organization of the event.
The high table on rare diseases day
His Excellency Dr. Jakaya Mrisho Kikwete, Former President of the United Republic ofu003cbru003eTanzania,in his speech on rare disease commemorations
Picture of a high Table with rare disease children (front row), From left, Dr. Mohamedu003cbru003eAlimohamed ,General secretary of TSHG, Hon. Anne Makinda, Former Speaker of theu003cbru003eParliament and the Chairperson of the National Health Insurance Fund (NHIF); Ms. Sharifau003cbru003eMbarak, Founder and chairperson AKRDF, His Excellency Dr. Jakaya Mrisho Kikwete, Formeru003cbru003ePresident of the United Republic of Tanzania,Hon Dr. Hamisi Kigwangalla (MP), Minister ofu003cbru003eNatural Resources and Tourism; Hon. Simai Mohamed Said (MHR), Deputy Minister ofu003cbru003eEducation and Practical Education Zanzibar; and Dr. Magreth Matonya, Director for Disableu003cbru003eEducation at the Ministry of Education and Vocational Training on behalf of Honourable Prof.u003cbru003eJoyce Ndalichako (MP), Minister for Education and Vocational Training
Hon Dr. Hamisi Kigwangalla (MP), Minister of Natural Resources and Tourism, deliveringu003cbru003espeech on behalf of Her Excellency Samia Suluhu Hassan, Vice President of the United Republicu003cbru003eof Tanzania
Honourable Simai Mohamed Said (MHR), Deputy Minister of Education and Practicalu003cbru003eEducation
The General Secretary of the Tanzania Society of Human Genetics, Dr. Mohamed Alimohamedu003cbru003eon his speech and word of Wwelcomein commemoration of Rare Disease Day
Ms. Sharifa Mbarak delivering a speech on her experience on raising kids with rare diseases (au003cbru003efounder and chairperson of AKRDF)
Dr. Ishengoma (National Institute of Medical Research), speaker on rare diseases.
Ali Kimara, a child with rare disease, reads a poem for the guests of honour and invitees during the commemoration of rare disease day