Ethics in genetics

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Agência FAPESP* –By Mônica Pileggi 

Agência FAPESP – The information generated by advances in genetics could rattle some of society’s most important values. Reflecting on the dilemmas and ethical questions created by advances in the area is therefore necessary as analysis of the human genome becomes increasingly accessible.

That is the main objective of the book GenÉtica: Escolhas que nossos avós não faziam (GenEthics: Decisions our grandparents didn’t have to make), written by geneticist Mayana Zatz – coordinator of the Human Genome Studies Center, one of the Research, Innovation and Dissemination Centers (CEPID) funded by FAPESP.

“I believe that the ethical questions that I describe in the book will be more and more relevant for the population as a whole,” the author said in an interview with Agência FAPESP. The work, fruit of a conversation between the author and renowned doctor Drauzio Varella, highlights some of the conflicts experienced by the scientist that raise legal and ethical challenges related to genetics. 

“It is increasingly possible to discover things with DNA. And what can be done with this information may or may not be beneficial. There is a legal void on several genetic questions, which must be discussed,” she stresses.

GenÉtica is targeted both to specialists in genetics and bio-ethics and the general public. Each chapter describes a new situation with the objective of getting the reader to think about how genetic information is used and the limit.

In total there are 13 chapters covering conceptual issues outside the realm of norms, such as privacy principles, confidentiality, selective choice of embryos, human cloning and DNA tests. “People have the impression that in order to study DNA, one must collect blood. But we leave our DNA everywhere, like, for example, on the cup and silverware that we use. The question is: who does DNA belong to?” asks Zatz. 

In the book, the scientist cites as an example the case of a boy known as Pedrinho, who was kidnapped from a maternity ward in Brasilia. At the same time that the case broke in local news, there were suspicions that Vilma, the woman who had taken and reared Pedrinho, might also have kidnapped Roberta, the girl reared as his sister. 

“However, during a police deposition, Roberta – who did not wish to know whether or not Vilma was her real mother – discarded a cigarette butt. Based on analysis of that material it was possible to examine her DNA and confirm that she also was not Vilma’s biological child.”

“What about her right not to know? Several legal specialists say that the maneuver was perfectly legal and that the DNA no longer belonged to her,” stresses Zatz.

The geneticist also calls attention to ethical debate on the early identification of genes that increase the predisposition for diseases – among which are certain types of cancer, hypertension and cardiac maladies – and the impacts of large scale sex selection, as witnessed in China and India, where the number of men is now significantly greater than the female population.
“Today we just talk about this. But in the near future, couples will be able to choose the color of their child’s eyes, ability in sports and intelligence,” she says.

The book also has a bibliography for anyone who would like to deepen their knowledge of the topics covered and another with explanations of the technical terms cited in the texts. 

“The book is for people to take notice of what is happening. This provocation is important to show reality because what is said in theory sounds good, but in practice, is very different,” she affirms. 
 

    GenÉtica: Escolhas que nossos avós não faziam 
    Author: Mayana Zatz 
    Release: 2011 
    Price: R$ 29.90 
    Pages: 202 
    More information: http://globolivros.globo.com

<p><b>By Mônica Pileggi <br />
<br />
Agência FAPESP</b> – The information generated by advances in genetics could rattle some of society’s most important values. Reflecting on the dilemmas and ethical questions created by advances in the area is therefore necessary as analysis of the human genome becomes increasingly accessible.<br />
<br />
That is the main objective of the book GenÉtica: Escolhas que nossos avós não faziam (GenEthics: Decisions our grandparents didn’t have to make), written by geneticist Mayana Zatz – coordinator of the Human Genome Studies Center, one of the Research, Innovation and Dissemination Centers (CEPID) funded by FAPESP.<br />
<br />
“I believe that the ethical questions that I describe in the book will be more and more relevant for the population as a whole,” the author said in an interview with <b>Agência FAPESP</b>. The work, fruit of a conversation between the author and renowned doctor Drauzio Varella, highlights some of the conflicts experienced by the scientist that raise legal and ethical challenges related to genetics. <br />
<br />
“It is increasingly possible to discover things with DNA. And what can be done with this information may or may not be beneficial. There is a legal void on several genetic questions, which must be discussed,” she stresses.<br />
<br />
GenÉtica is targeted both to specialists in genetics and bio-ethics and the general public. Each chapter describes a new situation with the objective of getting the reader to think about how genetic information is used and the limit.<br />
<br />
In total there are 13 chapters covering conceptual issues outside the realm of norms, such as privacy principles, confidentiality, selective choice of embryos, human cloning and DNA tests. “People have the impression that in order to study DNA, one must collect blood. But we leave our DNA everywhere, like, for example, on the cup and silverware that we use. The question is: who does DNA belong to?” asks Zatz. <br />
<br />
In the book, the scientist cites as an example the case of a boy known as Pedrinho, who was kidnapped from a maternity ward in Brasilia. At the same time that the case broke in local news, there were suspicions that Vilma, the woman who had taken and reared Pedrinho, might also have kidnapped Roberta, the girl reared as his sister. <br />
<br />
“However, during a police deposition, Roberta – who did not wish to know whether or not Vilma was her real mother – discarded a cigarette butt. Based on analysis of that material it was possible to examine her DNA and confirm that she also was not Vilma’s biological child.”<br />
<br />
“What about her right not to know? Several legal specialists say that the maneuver was perfectly legal and that the DNA no longer belonged to her,” stresses Zatz.<br />
<br />
The geneticist also calls attention to ethical debate on the early identification of genes that increase the predisposition for diseases – among which are certain types of cancer, hypertension and cardiac maladies – and the impacts of large scale sex selection, as witnessed in China and India, where the number of men is now significantly greater than the female population.</p>
<p>“Today we just talk about this. But in the near future, couples will be able to choose the color of their child’s eyes, ability in sports and intelligence,” she says.<br />
<br />
The book also has a bibliography for anyone who would like to deepen their knowledge of the topics covered and another with explanations of the technical terms cited in the texts. <br />
<br />
“The book is for people to take notice of what is happening. This provocation is important to show reality because what is said in theory sounds good, but in practice, is very different,” she affirms. <br />
 </p>
<ul>
    <li><b>GenÉtica: Escolhas que nossos avós não faziam </b><br />
    Author: Mayana Zatz <br />
    Release: 2011 <br />
    Price: R$ 29.90 <br />
    Pages: 202 <br />
    More information: <a href="http://globolivros.globo.com/">http://globolivros.globo.com</a><br />
     </li>
</ul>
<p> </p>