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13 August 2024 | Story André Damons | Photo Supplied
Maricel-van-Rooyen
Maricél van Rooyen, Project Manager for Research Information Management System (RIMS) and Research Ethics Adviser in the Directorate Research Development (DRD) at the University of the Free State (UFS), is the Programme Coordinator for a first-of-its-kind Southern African Research and Innovation Management Association (SARIMA)/ COP webinar on Environment and Biosafety Research Ethics.

The University of the Free State (UFS) is playing host to a first-of-its-kind webinar on Environment and Biosafety Research Ethics later this month with Maricél van Rooyen, Project Manager for Research Information Management System (RIMS) and Research Ethics Adviser in the Directorate Research Development (DRD), playing a pivotal role.

The webinar, which is part of the Eastern Region Community of Practice (COP), is taking place on 20 August. The target market for this virtual workshop is Biosafety and Environmental Research Ethics Committee (REC) chairpersons and members, professionals including research management professionals, administrators, research compliance managers and advisers, and research directors in Southern Africa and beyond.

Van Rooyen will be the Programme Coordinator for this Southern African Research and Innovation Management Association (SARIMA)/ COP Research Ethics Webinar, while Prof Robert Bragg, chairperson of the UFS Environmental and Biological Research Ethics Committee (EBREC), will give a presentation on the establishment of an EBREC.

The UFS, Stellenbosch University and the University of the Witwatersrand, form part of the COP which is a SARIMA (Southern African Research and Innovation Management Association) initiative to assist and share research ethics questions between institutions to empower research management and ethics compliance. SARIMA assisted with the online hosting and advertising of the webinar.

Purpose of the webinar

“Environment and Biosafety Committees in South Africa are a new idea, and only a few institutions in the country have such a committee. The UFS and the other institutions that will present at the workshop, take a leading role because they have already registered committees in place. We want to share and assist with establishing and operating such committees,” says Van Rooyen.

According to her, the need for the webinar arises from the upsurge of research and innovation in biotechnology and related fields over the past two decades that has led to exciting new discoveries in areas such as the engineering of biological processes, gene editing, stem cell research, CRISPR-Cas9 technology, Synthetic Biology, recombinant DNA, LMOs and GMOs, to mention only a few.

These advances, however, have generated concerns about biosafety, biosecurity and adverse impacts on biodiversity and the environment, leading to the establishment of Research Ethics Committees (RECs) at Higher Education and Research Institutions dedicated to reviewing research with implications for biosafety and the environment.

These EBRECs are in the early stages of their establishment and formalisation in South Africa, and there is much uncertainty about their composition, scope, procedures of decision-making and the principles that should guide their deliberations and assessments.

Leading the charge

The UFS took the lead in South Africa in ensuring international ethical compliance in this extended area of research, by establishing its own Environmental and Biological Research Ethics Committee (EBREC) six years ago. The UFS EBREC is one of only two such ethics committees at a South African university that combines the biosafety committee with environmental and biological research ethics to ensure ethics compliance in these fields.  The initiative started with Van Rooyen and her RIMS EthicsTeam, (Willem Kilian and Amanda Smith). The university is again taking charge with this webinar, which is a first of its kind.  

News Archive

The silent struggles of those with invisible disabilities
2016-12-13

Description: Dr Magteld Smith, invisible disabilities Tags: Dr Magteld Smith, invisible disabilities 

Dr Magteld Smith, researcher and deaf awareness
activist, from the Department of Otorhinolaryngology
at the UFS.

December is International Disability Awareness Month. Despite equality before the law and some improvements in societal attitudes, people with disabilities are still disadvantaged in many aspects of their lives. They are more likely to be the victims of crime, sexual abuse, are more likely to earn a low income or be unemployed, and less likely to gain qualifications than people without disabilities.

Demystifying disabilities is crucial

Dr Magteld Smith, a researcher at the University of the Free State (UFS) School of Medicine’s Department of Otorhinolaryngology, says that often people think the term “disability” only refers to people using a wheelchair, etc. However, this is a misperception because some individuals have visible disabilities, which can be seen, and some have invisible disabilities, which can’t be seen. Others have both visible and invisible disabilities. There is an ongoing debate as to which group has the greatest life struggles. Those with visible disabilities frequently have to explain what they can do, while individuals with invisible disabilities have to make clear what they cannot do.

Invisible disability is an umbrella term that captures a whole spectrum of invisible disabilities and the focus is not to maintain a list of specific conditions and diagnoses that are considered invisible disabilities. Invisible disabilities include debilitating fatigue, pain, cognitive dysfunctions, mental disorders, hearing and eyesight disabilities and conditions that are primarily neurological in nature.

Judging books by their covers
According to Dr Smith, research indicates that people living with invisible disabilities often suffer more strained relationships than those with visible disabilities due to a serious lack of knowledge, doubts and suspicion around their disability status.

Society might also make serious allegations that people with invisible disabilities are “faking it” or believe they are “lazy”, and sometimes think they are using their invisible disability as an “excuse” to receive “special treatment”, while the person has special needs to function.

Giving recognition and praise
“One of the most heartbreaking attitudes towards persons with invisible disabilities is that they very seldom enjoy acknowledgement for their efforts and accomplishments. The media also seldom report on the achievements of persons with invisible disabilities,” says Dr Smith.

Society has to understand that a person with a disability or disabilities is diagnosed by a medical professional involving various medical procedures and tests. It is not for a society to make any diagnosis of another person.

Dr Smith says the best place to start addressing misperceptions is for society to broaden its understanding of the vast, varying world of disabilities and be more sensitive about people with invisible disabilities. They should be acknowledged and given the same recognition as people with visible disabilities.

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