At the very outset, I wish to thank Mr. Kojji Omi, Founder and Chairman of Science and Technology for Society forum for inviting me in my capacity as the Minister of Science, Technology and innovation of the republic of Uganda to speak at this auspicious gathering to discuss science and technology for society.
Regarding the discourse of this afternoon, I would like to share some insights based on the guiding questions I was requested to respond to as follows:
1. How can genome research be used to devise better health care?
A genome is an organism’s complete set of DNA, including all of its genes. Genomics is an interdisciplinary field of biology focusing on the structure, function, evolution, mapping and editing of genomes.
In the recent years, there has been an extraordinary leap in knowledge of the human genome and its role in health and disease, though its’ mapping is far from complete. Technologies used to analyse genomes (genome sequencing machines) are changing radically hence making genomic testing much more accessible to the health system. Genomics has opened up many exciting possibilities that offer health and medical benefits (genomic medicine).
Genomic medicine is a new medical discipline that uses genetic information to inform patient diagnosis and treatment. Presently genomic medicine is being used in the fields of oncology, pharmacology, infectious, rare and undiagnosed diseases. Genetic information is used to:
• Provide information about an individual’s risk of developing disease (Predictive testing)
• Enhance diagnosis of rare and inherited diseases (Clinical diagnosis)
• Identify and guide treatment (Precision medicine)
Advanced research in genomic medicine could help improve detection and diagnostic techniques for diseases. There is potential to make genetic diagnosis of disease a more efficient and cost-effective process, by reducing genetic testing to a single analysis, which then informs individuals throughout life. Although individuals will vary in their response to genomic information, personal identification of risk could be expected to result in uptake of more effective monitoring and preventive actions.
Beyond refining diagnosis, the major value for genomics in health is expected to be in treatment. Clinicians worldwide are beginning to embrace genome sequencing to search for variants implicated in undiagnosed genetic diseases and using this information to guide treatment. Advancements in genomic research could help in making significant progression in the utility of precision medicine. Precision medicine involves tailoring the patient medical plan to the genetic makeup of each individual to improve treatment efficacy and reduce the risks of adverse effects.
Currently, genome sequencing is having the greatest impact in stratifying cancer, characterising genetic disease, and providing information about an individual’s likely response to treatment. Clinicians are beginning to use genomic information to predict how a person’s cancer will respond to drug therapy or surgery. In some cases the DNA and RNA of tumour cells is profiled to guide the use of existing treatments or focus on more targeted treatments. Tumour development can be stabilised by targeting specific molecules or pathways in tumour cells.
Genomic analysis provides opportunities for new approaches to therapeutic development, health care delivery and health management. The emergence of fast, reliable, and more-affordable whole genome sequencing (WGS) is opening the door to higher-resolution analysis of individual genomes and a more thorough exploration of less-frequent genetic variants in both common and rare disorders. Whole genome analysis has already produced some successes, such as identifying the cause of an atypical case of inflammatory bowel disease and uncovering a path for effective treatment. Whole genome analysis was recently used to study families with severe arterial calcifications; elucidating the molecular defect in this condition could help in developing interventions.
In addition to whole genome analysis, bench-to-bedside research is already producing numerous tests based on complex biomarkers for use in disease diagnosis, prognosis, and prediction of response to therapy. For example, a database developed by CDC to monitor tests in transition from research to practice has captured more than 300 new tests since 2010, although many questions remain regarding implementation, cost effectiveness, and outcomes.
Continued progression in the field of genomics research could lead to substantial changes in the way that we understand health conditions and medical treatments. For example, knowledge about particular differences in single nucleotide polymorphisms (SNPs) and the correlation to the risk of specific health conditions could help to target treatments to individuals who are at the highest risk of being affected. Additionally, these changes in SNPs could also predict the efficacy of a patient response to certain medical treatments.
2. Are there sufficient efforts being made to understand the role of microbes in keeping us healthy? What more can and should be done?
In a healthy human adult, microbe cells outnumber human cells, but the identity and degree of diversity in a single individual, their variability from person to person, and their role in disease and disease susceptibility is largely unknown. Although bacteria are often associated with infections, the bacteria that colonize the surface and insides of our bodies are essential for life. We are dependent on these bacteria to help digest our food, produce certain vitamins, regulate our immune system, and keep us healthy by protecting us against disease-causing bacteria.
Consequently the Human Microbiome Project (HMP) was set out to characterize the human microbiome and analyse its role in human health and disease. It was launched by the National Institutes of Health (NIH) in 2007 to provide a “road map” for discovering the roles the microbiome play in human health, nutrition, immunity, and disease in diverse niches of the human body. Human microbiome is defined as the collection of microbes (bacteria, viruses, and single-celled eukaryotes) that inhabit the human body. The HMP is focused on studying the microbes residing in five body areas: skin, mouth, nose, colon and vagina
The composition of the entire collection of microbes that make up the microbiome and its influence on our health and susceptibility to disease is not easily investigated. To date, only a small percentage of the bacteria that comprise the human microbiome have been identified, and a limited number of individual microorganisms have been studied. It simply has not been possible to isolate the vast majority (>95%) of microorganisms and culture them, presumably because the required growth conditions have not or cannot be reproduced in the laboratory. However, recent technological advances in DNA sequencing and the development of a method known as metagenomics have now made it feasible to analyse the entire human microbiome.
Metagenomics is a sequence-based approach that allows the genetic material from the complete collection of microbes to be analyzed without needing to cultivate the microorganisms. Microbial communities can be harvested from their natural environments, and their DNA sequences can be determined.
The metagenomic approach allows for the identification of microorganisms that were previously unrecognized and gives vastly more information than the analysis of singly isolated microbes. Researchers can determine the relative abundance of the different species and discover which metabolic pathways are encoded by the organisms to gain information about their functions in the body.
3. Food is medicine for many parts of the world. How can we ensure that adequate supplies of food reach the neediest? Can we improve both the quantity and the quality of food?
There is a need to increase investment the agricultural sector. Investment in agriculture in most developing countries has declined over the last 30 years and much less is spent on R&D compared to developed countries resulting in low productivity and stagnant production.
Farmers must also grow more on the land they currently operate through what is called “sustainable intensification.” This means using precision farming tools, such as GPS fertilizer dispersion, advanced irrigation systems, and environmentally optimized crop rotations. These methods can help produce more crops, reduce the negative environmental impacts from over-stressing resources (preventing groundwater depletion and the destruction of fertile lands through over-use of fertilizer).
Balance food and nutritional security. Until recently, attention has been focused on investment in research of the traditional staple crops (maize, rice and wheat) to tackle hunger. But it is now widely accepted that we must go beyond calorie intake and look at the nutritional balance of the crops grown and consumed. A better balance between the research and development of staple crops and horticultural crops (fruit, legumes and vegetables) is the obvious key to alleviating malnutrition.
Neglected or underutilized local varieties of fruit and vegetables often offer a good source of nutrition. We need to support farmers in growing new varieties and different crop mixes, giving them the information they need to manage the unfamiliar pests and diseases that may attack their plants. Animals, fish and poultry are also valuable sources of protein, vitamins and fatty acids. The development of a more diverse and competitive private seed sector, as well as capacity building efforts to help farmers improve soil health, are also crucial, since better quality seeds and soil lead to better quality produce.
Embrace new technology for knowledge transfer. A greater commitment to understanding and improving knowledge transfer amongst rural farmers is urgently needed. Agricultural advice delivered by mobile phone is one of the most effective methods of sharing information and takes advantage of the explosion in mobile technologies in developing countries. For example, agricultural advisory services delivered through voice messages can help overcome literacy and language barriers. Innovative provision of these services would address the issue of few extension workers to support the world’s farmers. Mobile technologies can be used to link smallholders to local and regional markets, where they can easily generate regular incomes. Mobile services can also be expanded to include market information.
Take a balanced ‘landscape’ approach to agriculture. As the Sustainable Development Goals take shape, we can see that certain goals focus on the environment, while others focus on food security. In most countries, however, it will not be possible to make a clean separation between the two. Should farmers preserve their land for the sake of food production, or focus on generating income from tourism? Agriculture is a huge part of making landscapes profitable, but so too are other industries. How can people in developing countries achieve the right balance? This approach requires creating solutions that take into account the diversity of interactions among people and the environment, agricultural and non- agricultural systems, and other factors that represent the entire context of agriculture.
Stop the spread of non-native invasive species. The spread of non-native invasive species has been largely positioned as a threat to biodiversity, and has received relatively little attention in relation to food production. However, the introduction of invasives poses a threat to agriculture: With no natural enemies to control them, non-native species like animals, insects and weeds can overrun vast areas of pastureland, infest crops, poison and kill livestock and, in some cases, force farmers from their land altogether.
Undertaking plant biosecurity and proper pest risk analysis is essential. In cases where invasive species have already been introduced, and are widespread, their control through natural, biological means can rectify the problem. By introducing invasive species’ natural enemies (e.g, the co-evolved fungi or insects that attack them) their spread can be controlled.
Create careers in agriculture for youth. Supporting young in agriculture is not a new challenge, but does need reinvigorated attention. In developing countries, many young people are leaving villages to work in cities, believing there is no future in farming and that there are better prospects in urban areas, yet quite the opposite is true. By 2050, global food demand is predicted to grow by 60 percent based on 2005 levels. Nurturing young people’s careers in agriculture so that they become part of an effective, efficient and sustainable food production system is a much needed part of safeguarding long-term food security. Supporting women is also central to safeguarding food production.
4. How should we deal with the problems of aging? Are the problems the same in developed and developing countries? What is the role of ethics in dealing with end-of-life issues?
The current population of Uganda is 44,650,320 (Oct. 5, 2019) based on the latest United Nations data. The life expectancy in the country is around 58.5 years, the age structure is skewed towards the younger generations with 48.47% of the Uganda’s population being 0-14 year-olds, 21.16% are 15-24 year age olds, 28.34% are 25-64 year olds and lastly, 2.04% are 65 or older. The age structure is skewed towards the younger generation due to high marriage rates.
The government has a dedicated department for the elderly under the Ministry of Gender, Labour and Social Development, and it drafted a national policy for older people. The country’s constitution makes special mention of making “reasonable provision for the welfare and maintenance of the aged”, an act of parliament allows for the election of older people into local government and issues affecting older people have been included in the Poverty Eradication Action Plan and strategic plans on agriculture, health and Aids. Uganda is also a signatory to the Madrid International Plan of Action on Ageing, which calls for the poverty of older people to be halved in line with the Millennium Development Goal (MDG) to halve world poverty by 2015. The plan was agreed in 2002.The Ugandan government also developed a range of programmes “which have the potential to include older people”, such as including older people in its poverty eradication policies.
For monetary and non-monetary reasons, work is a pivotal element of one’s well- being. Employment contributes not only to material well-being but also to psychological well-being through social interactions and opportunities for personal and professional growth. And unpaid work, like volunteering, care work, and artistic work, can provide these same psychological benefits. Given these positive effects, encouraging and rewarding paid and unpaid work among the elderly could be a pivotal part of the solution to the aging-related fiscal and social challenges.
To enact such a strategy, policy-makers could consider: a gradual retirement scheme allowing and furnishing options for and rewarding volunteering, care, and artistic activities among older society members. Encouraging older workers to remain longer in the labor force is often cited as the most viable solution. Phased-in retirement entails a scheme whereby older workers could choose to work fewer hours yet remain longer in the labor force, including after they retire.
Gradual retirement can be beneficial to societies, employers, and workers. Older workers can be valuable to organizations and younger colleagues due to their knowledge and experience. And third, late-life work has positive health and perceived well-being consequences for older employees.
Physicians and other healthcare professionals providing care for dying patients will confront many ethical dilemmas and challenges. Providing good care to dying patients requires physicians to be knowledgeable of potential ethical dilemmas and be aware of strategies and interventions aimed at avoiding conflict. It is important for the physician to be proactive with regard to decision making and have good communication skills. Keeping the patient central in all decision making, thus, the role of advance care planning is important in caring for patients at the end of life. The physician needs to have a good understanding of ethical principles and issues such as medical futility and the withdrawing and withholding of medical interventions as well as the legal ramifications of these ethical issues. With the growing attention on physician-assisted suicide and euthanasia, physicians need not only to be knowledgeable of the ethical, legal, and professional ramifications of these issues, but also to have a clear understanding of their own beliefs on this and other ethical issues at the end of life.
Good care for dying patients also encompasses attention to spiritual issues at the end of life. Therefore, physicians need to be comfortable with their role regarding end-of-life care and spirituality. It is important that physicians have an understanding of the ethical principles that underlie biomedical ethics and how they relate to providing care for dying patients. Providing good care to dying patients is an ethical mandate inherent in the very nature of the physician’s role.
Healthcare professionals can play an important role by providing detailed information about an advanced medical treatment which can be used during end-of- life care. Physicians can perform their duties rightfully by providing patients detailed information about the benefits, limitations and drawbacks of that treatment. Physician can work according to “deontological theory” and perform their duties to gain greatest good for the patient and act for patients benefit. Even though the patient has autonomy to choose a treatment, physician can explain its implications and try to emphasize on its consequences. Here, the patient has to perform a self-beneficence duty to take an autonomous decision as a competent individual to undergo the treatment and prolong life or forgo a futile treatment for the greatest good of society by saving cost and emotional stress. If the patient insists to prolong life with medically advanced treatment intervention, which according to physician evaluation might be futile, physician has the upmost responsibility to explain the information facts about withholding or withdrawing the medical treatment and see to it that there is no unnecessary utilization of resources for the futile treatment without causing harm to the patient. Physicians should respect the beliefs and values of that patient before withholding or withdrawing a treatment or giving an order for DNR (do not resuscitate) or resuscitation. Physician, additionally has a duty to preserve patient’s life but this duty is not to be confused with unnecessary use of resources and inflicting more harm than good to the patient by continuing medically futile treatments.
5. How do countries collaborate effectively in delivering healthcare? Are existing networks sufficient and effective? What new approaches are on the horizon?
Vast opportunities exist for collaboration among countries in a number of areas such as:
• Capacity building of medical personnel
• Health management information systems
• Comparative benchmarking
• Development and review of medical protocols for common medical issues
• Establishment of collaboration committees
• Extending funds or grants.