Concerns that children born by genetic editing have 'no genetic privacy'

by Emily Cline

In November 2018, it was reported that "Chinese scientists genetically engineered using DNA sequence editing technology" CRISPR-Cas 9 "and produced twin babies with HIV resistance" I gave it a shock. While doubts about the research itself and ethical issues are being debated, some researchers cite voices of concern that children born by genetic editing do not have "genetic privacy".

Why the Gene-Edited Babies Will Never Have Genetic Privacy
https://www.livescience.com/64182-gene-edited-babies-genetic-privacy.html

Kelly Hills, a bioethics scholar, says, "People want to see babies born after genetic editing," he is concerned that birth children will be subject to curiosity. Researchers can announce their real names in a hidden state in order to protect the privacy of their children, but the problem is that "gene information on genetically edited babies" is a problem.

Researchers in the genetic editing field carefully watching the announcement are paying attention to what kind of genetic editing has been done and what kind of gene was born with? For the proof that genetic editing technology has actually been carried out, the possibility that children's genetic information will be shared will be high, but just genetic information alone may be enough to identify individuals "Said Hills.

An example demonstrating that "genetic information alone linked with real names etc. leads to individual identification" is an investigation into the continuous murder case " golden state killer " occurred in California from the 1970s to the 1980s. In the Golden State Killer case, the perpetrator has done a lot of murder and rapes, and although the DNA of the criminal was also left on the scene, the criminal who was arrested for the other incident which was preserved in the police database It did not match with DNA.

However, in recent years police investigations progressed due to the appearance of a private DNA analysis company. A DNA analysis company called GEDmatch operates a service that allows users to acquire their own DNA information and to fill up the missing parts of the family tree by comparing them with registered databases. By uploading the genetic information of the culprit to this GEDmatch, the police can identify the person who seems to be "the distant relative of the criminal", build a family tree with possibility of the criminal by clues there, can become a criminal furthermore I narrowed down the person. As a result, in April 2018 he was able to arrest the 72-year-old Joseph James DeAngelo as the criminal of the Golden State Killer incident.

Criminal who narrowed down unresolved case by DNA analysis service and killed 12 people and raped more than 50 people to arrest after 40 years time - GIGAZINE

In this case, while the dramatic resolution of unresolved cases due to the progress of scientific and technological investigation was noted, it also caused a discussion "What is privacy of genetic information uploaded on the website?" It was. For example, DeAngelo himself has never undergone a DNA examination, but the distant relative has uploaded the DNA information and the principal was identified in the formula to be sweet. In October 2018 researchers announced that "60% of European Americans are closely related to open source DNA information" and many people like relatives' DNA information like DeAngelo suspects It is clear that you have the possibility to identify yourself.

According to Kiran Musunuru, an associate professor at the University of Pennsylvania, "If the scientific demonstration process is done as usual, it is highly likely that the majority of the children's genetic information will be disclosed . I do not know how much the twin genes are released, but if you have to show the fact that genetic editing was done normally and the twins were born, not only the children but also the DNA information of the parents Mr. Musunuru thinks that it will be announced.

"Scientists will want to know the genetic information of children and their parents," Musunuru said, even if scientists who take into consideration genetic privacy only have access to DNA information, in the long run A person who identifies twin personal information may appear using DNA information.

by merrycallie

Mr. Hills says that such genetic privacy issues are still unsolved by bioethicists and scientists. Mr. Hills said twin DNA information was disclosed only to a limited number of researchers and suggestions to make a lot of information private.