Why should changing the genome of human embryos ( human germline gene editing) not be allowed? Please use images provided as help

Issues and Ethics in the Helping Professions (MindTap Course List)
10th Edition
ISBN:9781337406291
Author:Gerald Corey, Marianne Schneider Corey, Cindy Corey
Publisher:Gerald Corey, Marianne Schneider Corey, Cindy Corey
Chapter1: Introduction To Professional Ethics
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Why should changing the genome of human embryos ( human germline gene editing) not be allowed? Please use images provided as help
46
MTNSA EveryoneNeeds... VOLTEIll about whethe53 15:29
use something that has an unprecedented capability of making changes that have
the potential to be passed on to subsequent generations," said Dana Carroll, a
ity Utah who is im directe
the
bloc
Hafner_2020__...omics Inst the Un+
la
t of
Public I
California, Berkeley.
The debate grew more heated in 2018, after a scientist in China announced the
birth of the world's first gene-edited babies - twin girls using CRISPR to give
them immunity to H.I.V. The announcement generated outrage around the world.
In December 2019, a court in China sentenced the scientist to three years in prison
for carrying out "illegal medical practices."
Last year, a group of scientists from seven countries called for a global moratorium
on changing inheritable DNA to make genetically modified children.
Professor Halley's middle child, Philip, was born with multiple anomalies of his
gastrointestinal system. In addition, Philip has had a succession of health
complications, including a stroke just before age 2, leading his doctors to suspect
a still-unidentified genetic disorder.
Families like hers, Professor Halley said, offer good examples of "very ripe
cognitive dissonance" around the topic of inheritable gene editing. As a mother,
she said, she would do anything to prevent the pain her son has been through.
Yet she is aware of the inconsistency between that desire and her unwillingness
to "do anything that would take away him, take away who he is," she said. "And
he is who he is partly because of the challenges he has faced."
Professor Halley acknowledged the inherent tension between the huge benefits
that gene-editing technology could bring in preventing serious diseases and
disabilities for which there is no treatment, and what she calls the "potential risk
of going down a road that feels uncomfortably close to eugenics."
Less ethically freighted are therapies to cure serious diseases in people who are
already living with them. "I think that there are opportunities to use gene-editing
technologies to treat genetic diseases that don't raise the societal implications of
altering permanently patterns of human inheritance," said Dr. Alex Marson,
director of the Gladstone-UCSF Institute of Genomic Immunology in San
Francisco.
"This is an opportunity for patients to consent to these procedures and be involved
in the discussions about the risks and benefits in ways that wouldn't be possible
by intervening in an embryo," Dr. Marson said. "Plus the modification wouldn't be
passed on to the patient's sperm or eggs. So it wouldn't affect future generations."
Yet, according to interviews with parents of children with disabilities, as
the children themselves, many are ambivalent about gene editing in gen
Ruthie Weiss, 13, was born with oculocutaneous albinism, a genetic dis
greatly impairing her vision that could theoretically be addressed by CRISPR.
"If there was someone who could have waved a magic wand and made the whole
thing go away, we would have done that in an instant," said Dr. Ethan Weiss,
Ruthie's father. Yet now, Dr. Weiss said, having watched Rune grow up, "We're
blessed to have her as she is "
Transcribed Image Text:46 MTNSA EveryoneNeeds... VOLTEIll about whethe53 15:29 use something that has an unprecedented capability of making changes that have the potential to be passed on to subsequent generations," said Dana Carroll, a ity Utah who is im directe the bloc Hafner_2020__...omics Inst the Un+ la t of Public I California, Berkeley. The debate grew more heated in 2018, after a scientist in China announced the birth of the world's first gene-edited babies - twin girls using CRISPR to give them immunity to H.I.V. The announcement generated outrage around the world. In December 2019, a court in China sentenced the scientist to three years in prison for carrying out "illegal medical practices." Last year, a group of scientists from seven countries called for a global moratorium on changing inheritable DNA to make genetically modified children. Professor Halley's middle child, Philip, was born with multiple anomalies of his gastrointestinal system. In addition, Philip has had a succession of health complications, including a stroke just before age 2, leading his doctors to suspect a still-unidentified genetic disorder. Families like hers, Professor Halley said, offer good examples of "very ripe cognitive dissonance" around the topic of inheritable gene editing. As a mother, she said, she would do anything to prevent the pain her son has been through. Yet she is aware of the inconsistency between that desire and her unwillingness to "do anything that would take away him, take away who he is," she said. "And he is who he is partly because of the challenges he has faced." Professor Halley acknowledged the inherent tension between the huge benefits that gene-editing technology could bring in preventing serious diseases and disabilities for which there is no treatment, and what she calls the "potential risk of going down a road that feels uncomfortably close to eugenics." Less ethically freighted are therapies to cure serious diseases in people who are already living with them. "I think that there are opportunities to use gene-editing technologies to treat genetic diseases that don't raise the societal implications of altering permanently patterns of human inheritance," said Dr. Alex Marson, director of the Gladstone-UCSF Institute of Genomic Immunology in San Francisco. "This is an opportunity for patients to consent to these procedures and be involved in the discussions about the risks and benefits in ways that wouldn't be possible by intervening in an embryo," Dr. Marson said. "Plus the modification wouldn't be passed on to the patient's sperm or eggs. So it wouldn't affect future generations." Yet, according to interviews with parents of children with disabilities, as the children themselves, many are ambivalent about gene editing in gen Ruthie Weiss, 13, was born with oculocutaneous albinism, a genetic dis greatly impairing her vision that could theoretically be addressed by CRISPR. "If there was someone who could have waved a magic wand and made the whole thing go away, we would have done that in an instant," said Dr. Ethan Weiss, Ruthie's father. Yet now, Dr. Weiss said, having watched Rune grow up, "We're blessed to have her as she is "
disabilities and perceived deficiencies hovers at the margins of what people
consider ethically acceptable.
"People are understandably very scared of it, of the many different roads it could
take us down as a society," said Meghan Halley, a bioethics researcher at Stanford
University and mother of three children, including a 5-year-old with a disability.
"Broadly speaking, this is always going to be problematic because of the many
things that disability means."
CRISPR is widely seen as holding great promise for treating diseases that until
now have been intractable.
There are two main types of CRISPR-based editing. One is the correction of a gene
in an individual living with a condition or disease. This is known as somatic cell
editing ("somatic" refers to the body). In June, NPR reported that Victoria Gray, a
woman with sickle cell disease, experienced a significant decrease in her episodes
of painful sickle crises in the first year after gene-editing treatment.
In the future, Ms. Gray's children or grandchildren may be able to take advantage
of the other type of CRISPR "fix": an edit to the human germ line. This involves
making changes to a fertilized egg that not only last through the life of an
individual but also are passed on to future generations.
This type of "inheritable" gene editing is inapplicable to conditions like autism or
diabetes, in which the hereditary component is caused by many different genes.
But it is suited to disorders caused by variation in a single gene. Sickle cell disease
fits into that category, as do cystic fibrosis and Duchenne muscular dystrophy.
Yet bioethicists point out that inheritable gene editing raises large societal
questions, given the dire consequences of an error, as well as the ethical questions
that arise at the prospect of erasing disability from human existence. There is also
concern that gene editing for health reasons will be out of reach for many because
of its cost.
"There absolutely must be broad public discussions about whether we're ready to
use something that has an unprecedented capability of making changes that have
the potential to be passed on to subsequent generations," said Dana Carroll, a
biochemistry professor at the University of Utah who is interim director of the
Public Impact Program at the Innovative Genomics Institute at the University of
California, Berkeley.
The debate grew more heated in 2018, after a scientist in China announced the
birth of the world's first gene-edited babies - twin girls - using CRISPR to give
them immunity to H.I.V. The announcement generated outrage around the world.
In December 2019, a court in China sentenced the scientist to three years in prison
for carrying out "illegal medical practices."
Last year, a group of scientists from seven countries called for a global moratorium
on changing inheritable DNA to make genetically modified children.
Professor Halley's middle child, Philip, was born with multiple anomalies of his
gastrointestinal system. In addition, Philip has had a succession of health
complications, including a stroke just before age 2, leading his doctors to suspect
a still-unidentified genetic disorder.
Families like hore Profor
Proforror Halloy caid offer good examples of "very ring
Transcribed Image Text:disabilities and perceived deficiencies hovers at the margins of what people consider ethically acceptable. "People are understandably very scared of it, of the many different roads it could take us down as a society," said Meghan Halley, a bioethics researcher at Stanford University and mother of three children, including a 5-year-old with a disability. "Broadly speaking, this is always going to be problematic because of the many things that disability means." CRISPR is widely seen as holding great promise for treating diseases that until now have been intractable. There are two main types of CRISPR-based editing. One is the correction of a gene in an individual living with a condition or disease. This is known as somatic cell editing ("somatic" refers to the body). In June, NPR reported that Victoria Gray, a woman with sickle cell disease, experienced a significant decrease in her episodes of painful sickle crises in the first year after gene-editing treatment. In the future, Ms. Gray's children or grandchildren may be able to take advantage of the other type of CRISPR "fix": an edit to the human germ line. This involves making changes to a fertilized egg that not only last through the life of an individual but also are passed on to future generations. This type of "inheritable" gene editing is inapplicable to conditions like autism or diabetes, in which the hereditary component is caused by many different genes. But it is suited to disorders caused by variation in a single gene. Sickle cell disease fits into that category, as do cystic fibrosis and Duchenne muscular dystrophy. Yet bioethicists point out that inheritable gene editing raises large societal questions, given the dire consequences of an error, as well as the ethical questions that arise at the prospect of erasing disability from human existence. There is also concern that gene editing for health reasons will be out of reach for many because of its cost. "There absolutely must be broad public discussions about whether we're ready to use something that has an unprecedented capability of making changes that have the potential to be passed on to subsequent generations," said Dana Carroll, a biochemistry professor at the University of Utah who is interim director of the Public Impact Program at the Innovative Genomics Institute at the University of California, Berkeley. The debate grew more heated in 2018, after a scientist in China announced the birth of the world's first gene-edited babies - twin girls - using CRISPR to give them immunity to H.I.V. The announcement generated outrage around the world. In December 2019, a court in China sentenced the scientist to three years in prison for carrying out "illegal medical practices." Last year, a group of scientists from seven countries called for a global moratorium on changing inheritable DNA to make genetically modified children. Professor Halley's middle child, Philip, was born with multiple anomalies of his gastrointestinal system. In addition, Philip has had a succession of health complications, including a stroke just before age 2, leading his doctors to suspect a still-unidentified genetic disorder. Families like hore Profor Proforror Halloy caid offer good examples of "very ring
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