
<p><a href="https://policies.google.com/privacy" target="_blank" rel="noreferrer noopener"></a></p>



<h2 class="wp-block-heading" id="h-topline">TOPLINE</h2>



<p>Scientists have identified a number of alarming issues with genetic studies of Europe’s long-persecuted Romani people, with an op-ed published Wednesday by the leading science journal&nbsp;<a href="https://www.nature.com/articles/d41586-021-03416-3" target="_blank" rel="noreferrer noopener"><em>Nature</em></a>&nbsp;pointing to ethical lapses in collection of samples and their overrepresentation in databases accessed by law enforcement agencies — part of a wider problem with “unethical uses” of DNA databases.</p>



<h2 class="wp-block-heading" id="h-key-facts">KEY FACTS</h2>



<p>DNA samples have been collected from thousands of Roma since the 1990s and possibly as far back as the 1970s, many of which were taken without consent before being shared for research purposes and added to public databases, the authors wrote.</p>



<p>In some cases genetic material was taken from prisoners, while in other instances people were offered incentives to give DNA, a practice “considered unacceptable by most human geneticists.”</p>



<h2 class="wp-block-heading" id="h-crucial-quote">CRUCIAL QUOTE</h2>



<p>“In our view, research and peer-review practices must change across a broad array of disciplines, from forensic genetics to molecular anthropology,” the authors wrote in&nbsp;<em>Nature</em>. “Failure to correct past and ongoing mistakes puts more people at risk of harm from the collection of DNA. It also threatens the reputation of human genetics — and of science in general.”</p>



<h2 class="wp-block-heading" id="h-big-number">BIG NUMBER</h2>



<p><a href="https://ec.europa.eu/info/policies/justice-and-fundamental-rights/combatting-discrimination/roma-eu/roma-equality-inclusion-and-participation-eu_en" target="_blank" rel="noreferrer noopener">10-12 million</a>. That’s how many Roma are believed to live in Europe, according to the European Union. “Roma” is itself an umbrella term that includes a number of diverse identities.</p>



<h2 class="wp-block-heading" id="h-key-background">KEY BACKGROUND</h2>



<p>The issues of racism and discrimination within genetics have become more prominent in recent years with the discussion of historic cases of abuse such as that of&nbsp;<a href="https://www.nature.com/articles/d41586-020-02494-z" target="_blank" rel="noreferrer noopener">Henrietta Lacks</a>&nbsp;in the United States, or of China&nbsp;<a href="https://www.nature.com/articles/d41586-021-03416-3" target="_blank" rel="noreferrer noopener">using DNA</a>&nbsp;to monitor the Uyghurs. Romani people continue to face persecution in Europe, including&nbsp;<a href="https://www.reuters.com/article/us-hungary-roma-segregation-ruling/hungarian-roma-feel-vindicated-by-school-segregation-ruling-idUSKBN22P1WK" target="_blank" rel="noreferrer noopener">segregation</a>&nbsp;and&nbsp;<a href="https://fra.europa.eu/sites/default/files/fra_uploads/fra-2016-eu-minorities-survey-roma-selected-findings_en.pdf" target="_blank" rel="noreferrer noopener">lack of access</a>&nbsp;to food and water.&nbsp;</p>



<h2 class="wp-block-heading" id="h-further-reading">FURTHER READING</h2>



<p>“<a href="https://www.nature.com/articles/d41586-021-03416-3" target="_blank" rel="noreferrer noopener">Europe’s Roma people are vulnerable to poor practice in genetics</a>” (<em>Nature</em>)</p>



<p>“<a href="https://www.nytimes.com/2021/11/17/science/genetics-ethics-roma.html" target="_blank" rel="noreferrer noopener">The DNA of Roma People Has Long Been Misused, Scientists Reveal</a>” (<em>New York Times</em>)</p>



<p>“<a href="https://www.reuters.com/article/us-global-roma-rights/roma-people-10-ways-europes-biggest-minority-faces-discrimination-idUSKCN1RK01Y" target="_blank" rel="noreferrer noopener">Roma people: 10 ways Europe’s biggest minority faces discrimination</a>” (Reuters)</p>



<p><meta charset="utf-8"><em><strong>By Téa Kvetenadze, Forbes Staff</strong></em></p>



<p><a href="https://www.forbes.com/sites/teakvetenadze/"></a></p>


SINGAPORE-ANIMAL-CRIME-ENVIRONMENT-WILDLIFE

Scientists Raise Ethical Concerns About Genetic Research Of Roma

<h3>Aisha Pandor, 31<br />
Founder, SweepSouth</h3>
<p>With Aisha Pandor’s down-to-earth demeanour, you would never guess how much she has achieved at such a young age. Her tiny physique is just as deceptive. She was the Vice Chairperson of the Karate Club in 2006 at the University of Cape Town, where she completed her PhD in Human Genetics.</p>
<p>Pandor, the daughter of South Africa’s Science and Technology Minister, Naledi Pandor, and Sharif Pandor, received the David and Elaine Potter Fellowship and the South African Women in Science Award for her thesis on retinitis pigmentosa, a type of hereditary blindness, and research on a therapy that may cure other hereditary diseases.</p>
<p>Because she has powerful parents, some might feel Pandor’s achievements were handed to her.</p>
<p>“My mother was the minister of science [when I received an award], but she had become the minister of science after I started studying science. My mother didn’t write my thesis for me. I sleep four hours a night; my mother doesn’t sleep for four hours doing my work. I work incredibly hard,” says Pandor.</p>
<p>“My parents were activists and teachers. I didn’t grow up rich but I have parents who believed in empowering their children. It’s the nature of the upbringing, I feel, that put me at an advantage, not the label behind my mother.”</p>
<p>In 2013, Pandor dumped her management consultant job to start a business with her husband, Alen Ribic, who is a software developer. They formed SweepSouth, an online service that provides domestic workers and cleaning products at the click of a button.</p>
<p>The business had a rocky start with no external funding for more than a year, forcing Pandor to sell her house and car.</p>
<p>“I had a negative bank balance multiple times. I have a child and I was honestly worried if I was going to be able to pay school fees, and you can’t keep asking family to help you. There were times, from an emotional point of view, where I felt like I can’t do this anymore,” admits Pandor.</p>
<p>She eventually got funding after pitching the business to angel investors at a conference in Cape Town. In June last year, the couple spent four months in the United States after being selected to join a business accelerator program offered by global venture capital seed fund, 500 Startups. SweepSouth has created thousands of job opportunities for women, the vast majority of whom were unemployed.</p>
<p>After successfully navigating her way past various pitfalls, Pandor wants to be a role model. She wants to mentor young South African women who want to clean up with their businesses.</p>
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Tag: Human Genetics

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Scientists Raise Ethical Concerns About Genetic Research Of Roma

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