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Updated: 06/02/2019

Published: 28/01/2019

Designer Babies: Are They Ethical?

 

Matt and Claire live in Washington state and like any other normal US family, they want children to complete their home. There's only one difference, Matt and Claire, want their baby to be a boy, with brown hair, blue eyes and they don't want him to start going bald at the age of 27, like Matt did, oh and he must also have an IQ of over 120. 

Question: Are Matt and Claire right to do this?

 

What exactly is a designer baby?

A few short decades ago the idea of a designer baby may have seemed to be nothing but the figment of a science fiction writer’s imagination. Today, though not yet a done deal, designer babies are fast becoming a scientific inevitability. So, what exactly is a designer baby?

Features of a designer baby - Choose which features your baby hasPay ($) and choose the features of your child

 

In 2004 the term designer baby made the big time, linguistically speaking, when it was first officially included as an entry in the Oxford English Dictionary who defined it as “a baby whose genetic makeup has been artificially selected by genetic engineering combined with in vitro fertilization to ensure the presence or absence of particular genes or characteristics.” Refining the term a little over the intervening years, currently the Oxford English Dictionary defines the term as, “A baby whose genetic make-up has been selected in order to eradicate a particular defect, or to ensure that a particular gene is present.”

But to really get to grips with what a designer baby is, we have to take a closer look at the concept of genetic selection and the forces that determine it.

 

What is genetic selection and why is it important?

Genetic selection is the process by which certain traits become more prevalent in a species than other traits. There are various forms of genetic selection that have influenced the development of life on this planet. These can be usefully grouped into the two categories of Natural Selection and Artificial Selection.

 

Forms of Genetic Selection:

 

i. Ecological Selection

 

This occurs when natural environmental forces determine the traits that an organism passes on to the next generation. This basic mechanism of evolution sees traits that are advantageous to a species’ survival getting passed on. Traits that can be defined as advantageous in respect to the environment may change over time due to changes in that environment.

 

ii. Sexual Selection

 

Another form of natural selection whereby one sex chooses a mate based on a preference for specific traits. It is considered a ‘special case’ of natural selection as traits may be developed that are actually detrimental to the survival of an individual. For example, the brightly colored feathers of some male birds used to attract a female may also make it more vulnerable to predators.

Natural selection - This women is choosing between two men based on their traitsNatural selection - This women is choosing between two men based on their strongest traits

 

iii. Artificial Selection

 

When humans select which plants and animals will reproduce based on desirable traits, selection is no longer natural. Over time this can lead to major changes in the features of a species. We can see this in making a comparison between farm stock varieties of common cultivated vegetables and their wild counterparts. We only need to look at a French poodle and a wolf and marvel at the fact they share a common ancestry to recognize the powerful impact artificial selection can have. It is from these roots that modern forms of artificial selection derive.

 

“It wasn’t until the discovery of Deoxyribonucleic Acid (DNA) that things really got going…”

 

The Central Role of DNA

It is clear then, humans have been genetically engineering since the earliest days of agricultural and animal husbandry. We have chosen plants and animals for breeding to ensure the propagation of desired traits and the elimination of those traits we deemed less attractive or useful. To strengthen desired traits we have been engaged in primitive forms of genetic selection without really knowing what we have been doing - until recently.

Biggest Cow In the WorldThe biggest cow in the world! Genetically modified or not?

 

It wasn’t until the discovery of Deoxyribonucleic Acid (DNA) that things really got going, particularly with the the discovery of the double helix in 1953, when we began to understand how this complex molecule guides the growth, development, function, and reproduction of an organism. The main job of DNA in the cell is the long-term storage of information. As we began to understand how all this information is encoded in the structure of the molecule, we began attempts to manipulate that structure.

 

In the decades after the discovery of the double helix, things really got moving. Let’s take a look at a chronology of some of the more significant moments in the history of designer babies:

 

 

Designer Babies Timeline

1960s

Scientists began to bombard plants with radiation in the hopes of causing random mutations and variations by chance that may prove useful. Surprisingly, this hit and hope strategy did yield some fruit.

1970s

In a more methodical approach, Scientists began to insert DNA snippets into bacteria, plants, and animals to study and modify them, with the earliest genetically modified animal being born in 1974. In 1978 the world’s first baby conceived by in-vitro fertilization (IVF) was born.

1980s

This decade saw the beginnings of more commercial applications of the emerging technologies. The first patent on a living organism was granted on a genetically-modified oil metabolizing bacteria. This established the precedent that “A live, human-made micro-organism is patentable subject matter.” This paved the way for many future patents on living organisms and strengthened the commercial viability of future research in the field.

1990s

The first GM foods created in laboratories go on sale with the launch of Flavr Savr in 1994. First somatic gene transfer experiments begin. The Human Genome Project “to determine the sequence of the human genome and identify the genes that it contains” begins.

2000

Conceived through IVF and preimplantation genetic diagnosis (PGD), the world’s first ‘savior sibling’ is born. Stem cells from Adam Nash’s umbilical cord were transplanted to his sister who suffered from Fanconi anemia. Adam has also been referred to as “the world’s first designer baby.”

2003

The Human Genome Project is completed.

2009

Employing PGD, a clinic begins offering prospective parents the opportunity to select physical traits of their future children.

2015

UK approves a technique named mitochondrial transfer that could see babies being born in Britain to three biological parents.

2016

The world’s first three-parent baby born.

2017

The first viable human embryos modified by CRISPR technology.

2018

A leading bioethics council stated that altering the DNA of a human embryo could be “morally permissible” if it was in the interests of the child and did not increase division in society.

 

“CRISPR is something of a genetic multi-tool that can be used for editing genomes.”

 

How do you create a designer baby? 'CRISPR-Cas9'

How do you create a designer baby? There's more to it than a credit card and an eye for designHow do you create a designer baby? There's more to it than a credit card and an eye for design

 

It is impossible to understand the designer baby phenomenon in recent times without taking a closer look at the impact of CRISPR-Cas9 and considering the potential impact it will have on future developments in this area.

CRISPR is something of a genetic multi-tool that can be used for editing genomes. CRISPR is useful for both somatic and germline editing (passed on / not passed on to offspring). An enzyme involved in immune defence that is found in bacteria, it is capable of locating DNA sequences, cutting the targeted sequence at source, and rewriting the genetic code in that location. Those optimistic on the benefits of CRISPR believe it is a revolutionary new technology that will afford us an opportunity to drastically reduce human suffering, citing its low cost, availability, and efficiency compared with more primitive technologies.

However, two recent studies have called into question the initial unbridled enthusiasm for CRISPR that emanated from large sections of the scientific community when evidence was uncovered that suggests an increased risk of altered cells triggering cancer.

While scientists are still striving to understand the full potential of this technology and the associated risks, its impact on our future will undoubtedly be profound.

 

Designer Babies: The Pros and Cons

Unsurprisingly with such a complex issue, a wide range of strongly held opinions exist in relation to this topic. As with any complicated issue, there are a range of advantages and disadvantages associated with each position and while it is not possible to provide an exhaustive list of assertions and contentions on such a controversial issue here, some of the most compelling arguments for and against are listed below.

Pros and Cons of designer babies

 

The Pros:

  • Genetic screening and engineering can be used to prevent the passing on of genetic diseases such as Down’s syndrome, Huntington's disease, and cystic fibrosis.
  • Parents can lower the risk of passing on hereditary diseases and disorders, such as diabetes, some cancers, obesity, and anemia etc.
  • The reduction of the risk of genetic and hereditary diseases being passed on could result in an increased life span.
  • New insights can be provided into how traits and diseases are passed on, helping improve the health of future generations.
  • Governments should not have the right to exercise control over reproduction.
  • Parents and society at large have been ‘engineering’ children to some degree for a very long time. Whether prenatally through the use of supplements, or postnatally through education and religion, the moulding of our children is nothing new.
  • Prohibition simply does not work. A ban will not eliminate demand and will push people to travel overseas or into the hands of unauthorized geneticists exposing parents and children to unnecessary danger.
  • Ethical and philosophical arguments should not stand in the way of technological progress.

The Cons:

  • The question of the violation a baby’s rights arises (both born and unborn). In the case of ‘savior siblings’, this is compounded by the ethical considerations around using one child as a ‘tool’ to help another.
  • Embryos are incapable of giving consent to having their genes altered.
  • Our understanding in this area is emergent. We do not yet fully understand the implications and effects of using these experimental technologies to create designer babies.
  • While it is true that somatic and especially germline gene-editing may have enormous therapeutic potential, the risk of causing off-target genetic mutation make their use unacceptable.
  • Germline editing could have serious unintended negative consequences for future generations, potentially changing the evolutionary direction of humanity.
  • Unequal access to healthcare risks gives an unfair advantage to the wealthy, an advantage that may well be consolidated with each succeeding generation.
  • There exists the potential for the creation of new divisions and the deepening of existing ones within human society. Future generations may become divided between genetically enhanced humans and those born naturally, causing problems much like the racial and religious divides that have plagued humanity for much of our history.

 

“There are compelling arguments from all sides of this multi-facetted argument.”

 

The Ethics of Designer Babies

As with many of the most controversial issues that divide us, lines often get drawn in the sand and positions only become more deeply entrenched when debate is engaged in. Undoubtedly, there are compelling arguments from all sides of this multi-facetted argument. Difficulties are sometimes compounded by the lack of clarity in relation to the definitions of some of the terms and concepts employed and so it is important that before weighing up the merits on each side, time is spent gaining a grasp of the related vocabulary and concepts - if they are unfamiliar.

 

Not surprisingly, some of the most trenchant criticism of the genetic modification of embryos comes from the major world religions. It is commonly argued in religious quarters that human life of every sort is sacred and the use of the technologies and techniques we have discussed amounts to interfering with the ‘will of God’. For some, this ‘interference’ is most problematic when it results in the termination of a viable embryo after a genetic defect has been detected, arguing that there is no moral difference with abortion.

 

Pastor-in-training, Esther Kim, who holds a M.Div. from Hanshin University, sees children as the fruit of a loving relationship and argues that parents should not interfere with the natural course of things. “I think that children are not possessions. Parents do not have the authority to change and form what is not theirs.” she says.

 

Esther also expresses concerns regarding the motivations that underlie advances in reproductive technologies and genetic modification in particular. Asserting that much of the impetus behind ongoing research stems from “a desire to play God”, she warns that, “God made us in his image, in his likeness. Humans forming babies according to their needs and desires could be going against God’s will.”

 

It isn’t only Christians that find cause for caution in their religious faith. The first baby born using a controversial mitochondrial ‘three-parent’ technique was born using the spindle nuclear transfer technique, rather than pro-nuclear transfer which had already been approved for use in the UK. The Muslim parents rejected pro-nuclear transfer as they were religiously opposed to the embryo destruction it entailed.

 

On the other hand, proponents of the tech behind genetic modification may argue that it would be morally indefensible not to use any technology at hand to give a child the best possible start in life.

The ethical dilemma of designer babies | Paul Knoepfler

 

Biologist Dr. Chao Yun Irene Yan, a professor at the Institute of Biomedical Sciences at the University of São Paulo, contrasts the differences in how we as a society view medical and aesthetic motivations. She notes, “A socially accepted example is if you know you are a carrier of a gene that has a high chance to generate a developmental syndrome and you want to make sure your child doesn't have it. A not so acceptable example is if you wanted your child to be red-haired.”

 

However, the moral complexity of these arguments is not only restricted to whether or not gene-editing is used for medical or aesthetic reasons, it is further complicated by whether or not gene-editing is somatic or germline. Dr. Yan explains, “The difference in somatic and germline editing is only on the possibility of transmitting the trait to the next generation. Somatic editing should change only selected tissues in the individual and will not be transmitted to his/her progeny.  In contrast, germline editing will remain permanently in the descendants of the individual.”

 

“However, editing the motor nervous system so that it would respond faster to stimuli (let's think, superathletes or supersoldiers) sounds pretty sinister to me...”

 

Some note the potential for the creation of two-tier humans in the future with a division developing between those who have been ‘upgraded’ by the new technologies and those who have not. They worry that gene-editing could be a sinister backdoor to eugenics. When asked about this, Dr. Yan responds, “The ethical issues or "sinister" aspects really depend on what is changed. For instance, changing a mutation for cystic fibrosis both at a somatic and germline level seems ethically fine. However, editing the motor nervous system so that it would respond faster to stimuli (let's think, superathletes or supersoldiers) sounds pretty sinister to me, even if it is kept only at the somatic level.”

 

The UNESCO International Bioethics Committee seems concerned about the possible widespread implications for future generations too, stating that germline modifications could “jeopardize the inherent and therefore equal dignity of all human beings and renew eugenics.”

 

On the other side of the argument it can be contested that we have been involved in tampering with the natural order of things for millenia through the selective breeding of plants and animals. Humans haven’t escaped entirely either. While many of the world’s countries have banned sex selection, due to the potential for negative social repercussions it may cause, it has not prevented it from occurring. When we look at countries that traditionally place greater value on male children, such as China and India, we can see these fears are indeed well founded. China currently has an estimated 116 men for every 100 women, while India has an excess of 37 million men. This can largely be accounted for due to sex determination by abortion. The implications of such an imbalance between the sexes for these societies, and indeed the world, are profound.

 

Traditional methods of reproduction are no longer the only game in town and procreation is no longer the exclusive domain of the nuclear family. While many lesbian couples already opt for IVF, which allows for the fertilised egg of one of the partners to be inseminated in the other partner, more recent advances in reproductive technologies could have far reaching implications for same-sex couples who wish to have a biological child together without the need for a donor.

 

The capabilities of genetic screening and modification technologies also bring with them potential perils as well as opportunities for members of the gay community. With the identification of ‘the gay genes’, the question arises whether or not this represents an existential threat to gay people - if parents were to opt to ‘design’ the gay out of their offspring.

 

I discussed this issue with Gabriella, a prominent gay activist, who prefers not to be identified fully. I asked her if she was concerned about a possible threat of ‘designer baby’ parents screening or editing their children with the aim of eliminating their ‘gayness’, she said, “I am for a parent’s right to choose. There are already some genetic conditions that are tested and that lead prospective parents to terminate a pregnancy. While my own personal belief is that all sexual orientations are equally valid, I think the woman or the parent's right to choose prevails. I am not really concerned that this would lead to the elimination of gay people given that there are plenty of prospective parents who would not mind having LGBTIQ children.”

 

Gabriella noted that the issue is a complex one that invokes a range of strong opinions among people in the gay community. Her belief in the right to choose in this instance is may be unpalatable for some and I believe it may have had some bearing on her preference not to be identified fully. She says, “I'm aware that this is a position that is often not shared by many of my colleagues within the LGBTIQ community and other fields, such as that of disability. We are all dependent on the choices of our parents for our existence. I would oppose any such intervention once a child is born.”

 

Conclusion

The issues that arise around the topic of designer babies strike to the very center of what it means to be human. They touch on every aspect of our scientific, religious, philosophical, and social realities invoking powerful arguments and emotional responses on all sides.

 

The case for the therapeutic use of new technologies may be difficult to argue against when we consider the extreme suffering that could potentially be avoided. That said, the question of what divides therapeutic and enhancement isn’t always self-evident.

 

The case for enhancement is somewhat more problematic, though. Whether employing new technologies to select or edit for simple traits such as eye color or freckles, or more complex traits such as height and intelligence, the ethical issues at hand are certainly more complex. As the UNESCO committee and many Hollywood movies have already identified, there are valid concerns of an increasingly segregated world developing that is divided along the lines of the ‘enhanced’ and the ‘naturally born’.

 

Wherever you stand on this issue, it is apparent that further public discourse is badly needed as the current rate of technological advances have appeared to outpace our ability to process the ethical conundrums those advances have thrown up.

 

Also in the News on Designer Babies:

 

GLOSSARY

Artificial Selection

The process by which humans use animal and plant breeding techniques to produce desirable traits.

CRISPR-Cas9

CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) Cas9 (an associated protein) is a gene editing system that has been adapted from naturally occuring bacteria. This revolutionary technology allows for faster, cheaper, and more accurate genome editing than any previously existing technology.

DNA

DNA (Deoxyribonucleic acid) is present in almost every living organism. DNA determines the structure and function of the cells in the body and is the carrier of genetic information.

DNA Snippets

A small section of DNA associated with one or more genes or attributes.

Genome

An organism’s complete set of genetic instructions that guide growth, development, and health. In the case of human beings, the genome is made up of 3.2 billion bases of DNA.

Germline Editing

Applies to altering embryos, sperm, or eggs in such a manner that the changes made are heritable. The resultant implications for future generations make it a most controversial form of modification.

Human Genetic Modification

The direct manipulation of the genome using molecular engineering techniques.

In-vitro Fertilization

When an egg is fertilized by sperm outside the body (in-vitro). The resulting embryos can then be transferred into the woman’s uterus with the intention of inducing pregnancy.

Mitochondrial Replacement Therapy (MRT)

To avoid the passing on of genetic mutations that cause disease, an embryo’s mitochondrial DNA that carries a risk of disease is replaced with healthy mitochondrial DNA from a third party donor. The resultant baby is born of the genetic material of three ‘parents’.

Natural Selection

The process of the selection by natural forces of which traits an organism passes on to the next generation. Forms of natural selection include ecological selection and sexual selection.

Preimplantation Genetic Diagnosis (PGD)

The process of profiling embryos to detect genetic defects prior to implantation to prevent the passing on of genetic diseases or disorders.

Savior Sibling

A savior sibling is a child born to provide cell or organ transplant to a sibling that is affected with a disease usually involving PGD

Somatic Editing

Targets specific cells in the human body for therapeutic purposes. It does not alter the sperm or the eggs and therefore does not produce heritable changes.

 

Further Reading:

 

See update Nov 2018:

http://theday.co.uk/science/debate-rages-as-first-designer-babies-born

https://www.theguardian.com/commentisfree/2018/nov/19/designer-babies-ethical-genetic-selection-intelligence

https://www.ted.com/talks/paul_knoepfler_the_ethical_dilemma_of_designer_babies/discussion?nolanguage=pt-

 

 

https://www.mercatornet.com/features/view/genetic-disruption-of-human-beings-creating-three-parent-ivf-babies/21503

 

https://www.newscientist.com/article/2107219-exclusive-worlds-first-baby-born-with-new-3-parent-technique/

 

https://www.theguardian.com/science/2017/jan/08/designer-babies-ethical-horror-waiting-to-happen

 

https://www.theguardian.com/science/2018/jul/17/genetically-modified-babies-given-go-ahead-by-uk-ethics-body

 

http://uk.businessinsider.com/arguments-for-and-against-editing-human-embryos-2015-12

 

https://ghr.nlm.nih.gov/primer/hgp/description

 

https://www.yourgenome.org/

 

https://www.statnews.com/2018/06/11/crispr-hurdle-edited-cells-might-cause-cancer/

 

https://en.unesco.org/news/unesco-panel-experts-calls-ban-editing-human-dna-avoid-unethical-tampering-hereditary-traits

https://embryo.asu.edu/pages/ethics-designer-babies

 

 

 

 

 


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