We will impact the quality of healthcare in Africa by increasing access to genomic data from African populations to promote inclusive research and development, which will lead to
optimized treatment and diagnostic outcomes for the African population, as well as
power drug discoveries that will not only treat Africans, but also treat all people
Presently, most genomic data used for development research is from Europe, United Kingdom and North American
Our mission is to address the fact that only 2% of genomic data available is African - therefore the company is building the world’s largest pan-African biobank to address this gap and the need to include underrepresented racial and ethnic minorities research.
Increasing access to genomic data from African populations can:
improve the responsiveness of products to the health of African people and
power drug discoveries that can treat people of all races
With permissions given by the participants, we can share the collected data and biospecimen with researchers and development research organizations for discovery and knowledge generation, diagnosis and treatment solutions.
Shared samples are devoid of any information that can be used to identify the individuals from whom it was taken.
We manage our data in accordance to the regulations of the Data and Sample Access Committee.
The sharing of our data is based on the terms of a fully executed Material Transfer Agreement, that would have been endorsed by the Nigeria National Health Research Ethics Committee.
In all instances, people who have contributed specimens to the 54gene biobank are able to ask to withdraw their samples and destroy such specimen, where there is still some stock left, 54gene will honor such requests.
54gene de-identifies, stores and adds genetic information to the samples. The samples are then aggregated in large cohorts or groups that provide statistical significance, something an individual or a few samples alone cannot provide. Companies developing therapeutics or diagnostic tests pay 54gene for their efforts to collect, de-identify and aggregate high quality genetic data.
54gene is currently focused on genomics studies related to non-communicable diseases. Specifically, we are interested in studying and supporting development research in cancers, endocrine disorders, cardiovascular diseases, neurodegenerative diseases and sickle cell disease.
The purpose of all biobanks is to provide access to data and biospecimen for secondary use by other researchers.
At 54gene we are open to support both academic and development research. When we are supporting development research, we do not sell data or biospecimen to the development research institutions like the pharmaceutical companies, but rather they would pay us for our efforts (the work we carry out to collect, curate and store data and biospecimen).
As part of our corporate social responsibility, we have identified a fund management scheme that will ensure whenever we collaborate with development research institutions, like the pharmaceutical companies, and we receive proceeds from their use of the data and biospecimen in our biobank, a reasonable proportion of such proceeds will be administered to support systems strengthening the institutions we collaborate with in each country.
A commercial biobank operates solely for the purposes of collecting, curating, storing and sharing of data and biospecimen with commercial and non-commercial entities. This may be for health or non-health related uses.
At 54gene we are interested in collaborating with commercial and non-commercial entities that are working to develop diagnostics and treatment solutions to improve human health.
At 54gene, our biobank resources – specimen and data are available for use by academic and development research institutions. A data and sample access committee will review and make decisions to provide access to data and samples based on availability and objectives of the proposed research use.
The 54gene laboratory seeks to support both diagnostics and research aims.
When used for diagnostics, we would conduct specified tests and share the results with our clients. Specimen used to conduct the tests will be disposed in line with standard good laboratory practice. There are instances where doctors who collect specimen for diagnostics have also received consent to either biobank and/or use diagnostic data for research purposes. 54gene is happy to collaborate with such clients to help in banking the samples and associated data where the fully signed informed consent is shared with 54gene. 54gene will not biobank any specimen, not accompanied by a copy of the consent from the person
Research collaboration is an established professional endeavor. It entails a relationship between an organization that is providing the funding for research, institutions/communities in which the research will be conducted and the researchers that will conduct those studies.
People who are engaged as researchers receive remuneration for their efforts in planning and implementing the study at the sites assigned to them, which is usually the hospital where they are working.
In our biobank, each specimen is accompanied with some information about the person from whom the specimen was collected, but which cannot be used to tell who that person is.
The samples are stored in a de-identified manner in our biobank. A portion of the sample will have genetic information added and then the data is aggregated with tens of thousands of other samples.
In all instances, people who have contributed specimen to 54gene biobank are able to ask to withdraw their samples and destroy such biospecimen, where there is still some stock left. Any information derived from said sample is also deleted.
At 54gene, we only accept and biobank specimen for which we have the consent of the participant to bank. Our informed consent describes the use of samples for research. The consent terms and conditions refer to the samples being used in Nigeria or overseas. In our database, all biospecimen are matched against the consent received by the participant.
Genomics research is exploratory by nature and not interventional. For this reason it is difficult to have a direct correlation between genetics research and intervention.
The genomics research - drug discovery journey includes many interim discovery steps. 54gene’s research currently involves the earliest of stages of the drug-discovery journey. 54gene data will be combined with many other sources of data and it is highly unlikely to attribute any discovery to such data.
We do not give or sell samples we have collected. In the event 54gene collaborates with a development research organization and receives some proceeds for providing access to data with commercial purposes in mind, a percentage of the proceeds, decided on a case by case basis, will be deposited in a dedicated fund for use to benefit societies where we are operational.
If 54gene were to be involved in a development research collaboration, which is determined ab-initio to hold high promise of potentially leading to a new drug discovery, we will work with authorities in the relevant country to agree on a policy to provide reasonable access to such drugs for a defined population set in those countries in line with best practices, such as CIOMS recommendations.
Because of the nature of genomics research, there is no direct benefit to participants. However, there is a potential for long term benefit to society by ensuring inclusion of Africans in research and development of therapeutics.
Each person's sample contributes to our biobank and as part of our corporate social responsibility, we have identified a fund management scheme that will ensure whenever we collaborate with development research institutions, like pharmaceutical companies, and we receive proceeds from their use of the data from our biobank, a reasonable proportion of such proceeds will be will be deposited in a dedicated fund for use to benefit societies were we are operational.
Abasi has worked in the US, UK and Nigerian healthcare space. He was previously a management consultant working with PwC and IQVIA (formerly QuintilesIMS) and has consulted for/ worked with leading healthcare organisations including fortune 100 pharmaceutical companies, academic and research institutions and governments.
Abasi has also worked as a cancer researcher and published a seminal paper on pancreatic cancer immunology in the journal, Gastroenterology. He holds a PhD in Cancer Biology from University of London, a masters in human molecular genetics from the Imperial College London and a masters in business management from the Claremont Colleges, California.
Dami was the Managing Partner at Medismarts International, a Health Technology Company he co-founded in 2015 which is at the forefront of providing technology to the health industry in Nigeria. He led Medismart to deploy their cloud EMR platform in 140 hospitals and to gain 36% market share of claims processed in Nigeria.
Damilola also led the team that carried out process reengineering for 20 departments of the government of Kaduna State, and has also worked on projects for Deloitte and Pharmaccess.
Dami holds a B.sc degree in Economics from the Obafemi Awolowo University and is passionate about ensuring that the healthcare industry in Africa is technology driven.
Dr Lola Salako
Dr. Omolola Salako is a consultant clinical and radiation oncologist with a special interest in breast, head and neck cancer and economics of cancer. She is an active cancer researcher and cancer advocate. Dr Salako's research interests include breast cancer radiotherapy techniques, novel risk factors in women of African descent and radiation toxicities.
In addition to her clinical responsibilities, Dr Salako is a patient advocate with extensive skills in counselling, advocacy and survivorship. She earned her MBBS degree at College of Medicine, University of Lagos, completed housemanship and a residency in Radiation Oncology at Lagos University Teaching Hospital in 2006 and 2013 respectively.
Gatumi is a global health-tech professional with over 7 years experience leading, managing and working with teams in healthcare, business, technology and investment banking.
Prior to co-founding Stack Diagnostics, he worked in global institutions like Shell, Renaissance Capital and most recently as the Head of Operations in a tech accelerator.
Francis has over 10 years software development experience building enterprise solutions for businesses across Nigeria. He has also led teams to build solutions for Visa, DFID, Microsoft, and more.
The products he has built have gotten local and international recognition for innovation and performance. He is an alumni of Fate Foundation and Lagos Business School.
Ijeoma has over 5 years of experience carrying out Pan-African Business Development work and managing client relationships. She has launched technology products in Nigeria, South Africa and Cameroon and has managed the accounts of the Africas largest Telcos such as MTN and 9Mobile (formerly Etisalat).
She holds a bachelor's degree in Biomedical Technology from the University of Port Harcourt, a diploma in Marketing from the Chartered Institute of Marketing, and a Certificate in Entrepreneurship from Harvard Business School. When she is not working, Ijeoma enjoys fashion designing, travelling and content creation.