This article reads like a press release or a news article and may be largely based on routine coverage .(March 2021) |
Vence L. Bonham Jr. | |
---|---|
Education | Michigan State University (BA) Ohio State University (JD) |
Vence L. Bonham Jr. is an American lawyer who is the acting Deputy Director of the National Human Genome Research Institute (NHGRI) of the U. S. National Institutes of Health, and is the leader of the NHGRI Health Disparities Unit. His research focuses on social determinants of health, particularly with regard to the social implications of new genomic knowledge and technologies. [1]
Bonham earned his Bachelor of Arts degree from Michigan State University in 1978. [2] He taught middle school history and social studies before earning his Juris Doctor degree from Ohio State University Moritz College of Law in 1982. [2] His mother was a school social worker and his father was a science teacher. He began his career in healthcare law and then obtained a Health Services Research Fellowship from the American Association of Medical Colleges. Mr. Bonham then taught health policy and bioethics to medical students at Michigan State for a number of years before starting at the NHGRI in 2002. [3] He is a member of the NIH Tribal Health Research Coordinating Committee (THRCC). [4]
Bonham has contributed to guidelines highlighting issues such as maintaining a focus on improving health, striving for global diversity, maximizing the usability of genomics for the general public, and promoting robust and consistent standards for genomic research. [5] [6] His ongoing work addresses the balance of scientific progress and ethical and equitable treatment of persons.
As director of the Health Disparities Unit at NHGRI, Bonham leads a team that aims to achieve health equity in the context of genomic medicine, where genomic knowledge, access to genomic services (testing and counseling), and unbiased implementation of genomic medicine are accessible and applied globally and fairly across all populations. [7]
He has organized and advocated for the development of improved laws surrounding the application of genomics in a clinical setting and precision medicine to better serve underrepresented communities. [8] Bonham and colleagues have developed three scales in an attempt to assess the knowledge and perception of race and human variation by clinicians. [9] These scales are: Genetic Variation Knowledge Assessment Index–GKAI, Health Professionals Beliefs about Race—HPBR, and Racial Attributes in Clinical Evaluation—RACE.
Bonham has published on the treatment, screening, and study of patients with sickle cell disease (SCD) and is an expert on the history and emerging science regarding this condition. [10] [11] [12] [13] [14] [15] [16] In his role at the NHGRI, he leads the INSIGHTS program (The Insights into Microbiome and Environmental Contributions to Sickle Cell Disease and Leg Ulcers Study), a longitudinal interdisciplinary study exploring sickle cell disease in adults that covers genomic, microbial, physical, and social influences. [17] He sees SCD as a condition that highlights and demonstrates healthcare disparities "where the outcomes and the experiences are evidence of not getting the necessary treatments and focus historically." [3] This makes SCD an important disease to study through the lenses of healthcare equity and justice. [18] [19] [20] [21] With Lisa E. Smilan, he wrote an article for the North Carolina Law Review in 2019 regarding the legal and ethical considerations of somatic gene editing in sickle cell disease. [22]
Bonham and his research group are moving forward with the World Health Organization and investigators in Sierra Leone to study adults with SCD, to increase utilization of newborn screening, and to address the ethical and logistical considerations of curative therapies in a developing country. [23]
With the emergence of gene editing technologies such as CRISPR, Bonham has emphasized that SCD is a critical example of the value of respect for persons, fairness, and worldwide collaboration as genomic technology continues to evolve. [23] Clinical trials for one of the first attempts in somatic cell genome editing using CRISPR technology are for the treatment of sickle cell disease. he and his colleagues have published multiple peer-reviewed studies identifying gaps in knowledge of trial participants that could prevent them from giving adequately informed consent. [24] [25] [14] He highlights the importance of engaging with the SCD patient community with regard to scientific developments in treatment and management of the disease and prioritizing their protection and equitable care. [26] [23]
Bonham and his wife live in Bethesda, MD and have two sons. He considers himself an art lover and has his own collection of primarily African American art. [3]
Gene therapy is a medical technology that aims to produce a therapeutic effect through the manipulation of gene expression or through altering the biological properties of living cells.
Race and health refers to how being identified with a specific race influences health. Race is a complex concept that has changed across chronological eras and depends on both self-identification and social recognition. In the study of race and health, scientists organize people in racial categories depending on different factors such as: phenotype, ancestry, social identity, genetic makeup and lived experience. "Race" and ethnicity often remain undifferentiated in health research.
The Cancer Genome Atlas (TCGA) is a project to catalogue the genomic alterations responsible for cancer using genome sequencing and bioinformatics. The overarching goal was to apply high-throughput genome analysis techniques to improve the ability to diagnose, treat, and prevent cancer through a better understanding of the genetic basis of the disease.
Personal genomics or consumer genetics is the branch of genomics concerned with the sequencing, analysis and interpretation of the genome of an individual. The genotyping stage employs different techniques, including single-nucleotide polymorphism (SNP) analysis chips, or partial or full genome sequencing. Once the genotypes are known, the individual's variations can be compared with the published literature to determine likelihood of trait expression, ancestry inference and disease risk.
Sickle cell disease (SCD), also simply called sickle cell, is a group of hemoglobin-related blood disorders typically inherited. The most common type is known as sickle cell anemia. It results in an abnormality in the oxygen-carrying protein haemoglobin found in red blood cells. This leads to the red blood cells adopting an abnormal sickle-like shape under certain circumstances; with this shape, they are unable to deform as they pass through capillaries, causing blockages. Problems in sickle cell disease typically begin around 5 to 6 months of age. A number of health problems may develop, such as attacks of pain in joints, anemia, swelling in the hands and feet, bacterial infections, dizziness and stroke. The probability of severe symptoms, including long-term pain, increases with age. Without treatment, people with SCD rarely reach adulthood but with good healthcare, median life expectancy is between 58 and 66 years. All the major organs are affected by sickle cell disease. The liver, heart, kidneys, gallbladder, eyes, bones, and joints also can suffer damage from the abnormal functions of the sickle cells, and their inability to flow through the small blood vessels correctly.
Whole genome sequencing (WGS) is the process of determining the entirety, or nearly the entirety, of the DNA sequence of an organism's genome at a single time. This entails sequencing all of an organism's chromosomal DNA as well as DNA contained in the mitochondria and, for plants, in the chloroplast.
Eric D. Green is an American genomics researcher who had significant involvement in the Human Genome Project. He is the director of the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH), a position he has held since 2009.
Cancer genome sequencing is the whole genome sequencing of a single, homogeneous or heterogeneous group of cancer cells. It is a biochemical laboratory method for the characterization and identification of the DNA or RNA sequences of cancer cell(s).
The PhenX Toolkit is a web-based catalog of high-priority measures related to complex diseases, phenotypic traits and environmental exposures. These measures were selected by working groups of experts using a consensus process. PhenX Toolkit's mission is to provide investigators with standard measurement protocols for use in genomic, epidemiologic, clinical and translational research. Use of PhenX measures facilitates combining data from a variety of studies, and makes it easy for investigators to expand a study design beyond the primary research focus. The Toolkit is funded by the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH) with co-funding by the Office of the Director (OD), the National Institute of Neurological Disorders and Stroke (NINDS), and the National Heart, Lung, and Blood Institute (NHLBI). Continuously funded since 2007, PhenX has received funding from a variety of NIH institutes, including the National Institute on Drug Abuse (NIDA), the National Institute on Mental Health (NIMH), the National Cancer Institute (NCI) and the National Institute on Minority Health and Health Disparities (NIMHD). The PhenX Toolkit is available to the scientific community at no cost.
Translational bioinformatics (TBI) is a field that emerged in the 2010s to study health informatics, focused on the convergence of molecular bioinformatics, biostatistics, statistical genetics and clinical informatics. Its focus is on applying informatics methodology to the increasing amount of biomedical and genomic data to formulate knowledge and medical tools, which can be utilized by scientists, clinicians, and patients. Furthermore, it involves applying biomedical research to improve human health through the use of computer-based information system. TBI employs data mining and analyzing biomedical informatics in order to generate clinical knowledge for application. Clinical knowledge includes finding similarities in patient populations, interpreting biological information to suggest therapy treatments and predict health outcomes.
Elaine Ann Ostrander is an American geneticist at the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH) in Bethesda, Maryland. She holds a number of professional academic appointments, currently serving as Distinguished and Senior Investigator and head of the NHGRI Section of Comparative Genomics; and Chief of the Cancer Genetics and Comparative Genomics Branch. She is known for her research on prostate cancer susceptibility in humans and for conducting genetic investigations with the Canis familiaris —the domestic dog— model, which she has used to study disease susceptibility and frequency and other aspects of natural variation across mammals. In 2007, her laboratory showed that much of the variation in body size of domestic dogs is due to sequence changes in a single gene encoding a growth-promoting protein.
Undertreatment of pain is the absence of pain management therapy for a person in pain when treatment is indicated.
The He Jiankui affair is a scientific and bioethical controversy concerning the use of genome editing following its first use on humans by Chinese scientist He Jiankui, who edited the genomes of human embryos in 2018. He became widely known on 26 November 2018 after he announced that he had created the first human genetically edited babies. He was listed in Time magazine's 100 most influential people of 2019. The affair led to ethical and legal controversies, resulting in the indictment of He and two of his collaborators, Zhang Renli and Qin Jinzhou. He eventually received widespread international condemnation.
CRISPR gene editing (CRISPR, pronounced "crisper", refers to "clustered regularly interspaced short palindromic repeats") is a genetic engineering technique in molecular biology by which the genomes of living organisms may be modified. It is based on a simplified version of the bacterial CRISPR-Cas9 antiviral defense system. By delivering the Cas9 nuclease complexed with a synthetic guide RNA (gRNA) into a cell, the cell's genome can be cut at a desired location, allowing existing genes to be removed and/or new ones added in vivo.
Personalized onco-genomics (POG) is the field of oncology and genomics that is focused on using whole genome analysis to make personalized clinical treatment decisions. The program was devised at British Columbia's BC Cancer Agency and is currently being led by Marco Marra and Janessa Laskin. Genome instability has been identified as one of the underlying hallmarks of cancer. The genetic diversity of cancer cells promotes multiple other cancer hallmark functions that help them survive in their microenvironment and eventually metastasise. The pronounced genomic heterogeneity of tumours has led researchers to develop an approach that assesses each individual's cancer to identify targeted therapies that can halt cancer growth. Identification of these "drivers" and corresponding medications used to possibly halt these pathways are important in cancer treatment.
Charles Nohuoma Rotimi is the Scientific Director of the National Human Genome Research Institute (NHGRI). He joined the National Institutes of Health (NIH) in 2008 as the inaugural Director of the Trans-NIH Center for Research in Genomics and Global Health and was also the chief of the NHGRI's Metabolic, Cardiovascular, and Inflammatory Disease Genomics Branch. He works to ensure that population genetics include genomes from African populations and founded the African Society of Human Genetics in 2003 and was elected its first president. Rotimi was instrumental in the launch of the Human Heredity and Health in Africa (H3Africa) with the NIH and the Wellcome Trust. He was elected to the National Academy of Medicine in 2018.
Neil Hanchard is a Jamaican physician and scientist who is clinical investigator in the National Human Genome Research Institute (NHGRI), where he leads the Childhood Complex Disease Genomics section. Prior to joining NHGRI, he was an associate professor of molecular and human genetics at the Baylor College of Medicine. He is a fellow of the American College of Medical Genetics and Genomics,. Hanchard's research focuses on the genetics of childhood disease, with an emphasis on diseases impacting global health.
Kathy Lynn Hudson is an American microbiologist specializing in science policy. She was the deputy director for science, outreach, and policy at the National Institutes of Health from October 2010 to January 2017. Hudson assisted in the creation and launch of All of Us, the BRAIN initiative, and the National Center for Advancing Translational Sciences. She founded the Genetics and Public Policy Center at Johns Hopkins University in 2002. Hudson is an advocate for women in science.
Adebowale A. Adeyemo is a Nigerian physician-scientist and genetic epidemiologist specialized in genomics and cardiometabolic disorders. He is the deputy director and chief scientific officer of the Center for Research on Genomics and Global Health at the National Human Genome Research Institute.
The Innovative Genomics Institute (IGI) is an American nonprofit scientific research institute founded by Nobel laureate and CRISPR gene editing pioneer Jennifer Doudna and biophysicist Jonathan Weissman. The institute is based at the University of California, Berkeley, and also has member researchers at the University of California, San Francisco, UC Davis, UCLA, Lawrence Berkeley National Laboratory, Lawrence Livermore National Laboratory, Gladstone Institutes, and other collaborating research institutions. The IGI focuses on developing real-world applications of genome editing to address problems in human health, agriculture and climate change.
{{cite journal}}
: CS1 maint: DOI inactive as of November 2024 (link){{cite journal}}
: CS1 maint: DOI inactive as of November 2024 (link)