La Trobe University Philosopher on Gene Editing Babies

In the public interest.

I recall being told as a secretary I’d never amount to anything because I made a mistake typing. Another time I was told I was stupid when I left a telex on. I was taunted as ugly when I was young. I was told I should work with my hands (not intelligent). I didn’t read until I was 17.

I left school at year 10, went back at 21 to do year 11 and 12 in one year. I was dyslexic and mirror wrote when I was a child (everything right way in a mirror), I wrote with my left hand (and could also write with my right hand). I often got my words back to front and blushed as I knew I was being judged. I couldn’t spell, didn’t know grammar and much more. I could have been classed as one of those that should be gene edited or a “useless eater” that has no net value in this society or a future technocracy. Yet through my hardship I came to see my disability was in reality a higher ability. I came to realise that I could see from a range of perspectives, I had deep empathy for others, I never gave up, I didn’t believe my critics but chose truth (clarity), I stood up for myself and others when bullied as I believed in fairness. I chose courage over compliance. I put myself through university (La Trobe, Griffith Uni’s) at my own expense. I forced myself to read holding my stomach. I disciplined myself working much harder than others (not a natural scholar). Through university education my speech improved (no reverse words), my writing improved, my grammar improved. Today my speech is word perfect as I am in alignment with life now. I could easily have been seen as imperfect but the harshness of my life was the very training ground that prepared me for these exact times. My father said to me he would choose a hard life over a easy one as he wanted the challenge to improve himself. My father was self made, his own person and had courage. He was not violent. Perhaps those are the genes I inherited together with nurture.

Who is to say what is perfect and what is not? Not one person knows my purpose. Today I am becoming clear. It was courage not academic acumen that has brought me to where I am. It was life that shape changed me not algorithms. It was my purpose that moved me not ambition. It was the truth that was awakened not from book learning but from conflict that forced me to find it. That is the perfection arising out of imperfection. Purity is being at peace with yourself. No guilt, no hatred, no regret, no loss just a inner awareness you did your best. That for me is success.

May those at the top come to see the equality of who we all are even at the sub atomic level. May they come to realise the huge responsibility they shoulder during these times of change and the decisions of ‘what direction’ truly serves? Not only for the current generation but the future of the human race if we survive human created disruption fuelled by beliefs of imperfection and misplaced value. What type of world are we preparing for children in the future? The question is – do we design our children to eugenics specifications or accept the challenges life sends us through our children? Do we believe it is all about controlling the world in our perceived image or is it allowing life to send teachers in a range of forms – dissidents, critics, elderly, disabled, colleagues, poor, professionals, technocrats, democrats, silly clowns and so on?

I’ve had many teachers and I never weakened to hate them. I could say the world should be at peace, the reality is it is not. It was through my own intense suffering that I found perfection as the order in chaos was realised (not order out of chaos). I saw the chaos theory as a geometric symmetry based in my reality, as contrast (difference) always leads to something greater as you have to find truth. Truth is alignment with nature it is not peer reviewed. This is the spiral of growth that comes from challenge that does not make the world predictable. You have to work it out to find peace and happiness otherwise you won’t survive.

Perhaps those very differences were the grist in the mill that was the making of who I became. Perhaps the imperfection was the perfection of “possibility” I had to reach for to solve the problem rather than submit to circumstances in which there appeared no hope (powerlessness) believing in a mechanical sameness of conformity which challenges nothing and diminishes the “greatness” in our humanity. The blueprint is like the plant breaking through the hard earth to be enlightened by the sun (solar flare). The same applies to the disabled, one of which was one of my greatest teachers as she taught me humility. The homeless taught me the greatness in survival and the resilience of breaking through the challenges. The child abuse victim who transformed severe suffering into the wisdom of a new future with the highest courage.

What if – nothing is imperfect only our narrow frame of reference, our conservatism (fear), our limited education (cognitive) or our class (pedigree) that make it so? What if what you get is what you ‘need’ rather than what you want? What if that becomes your modus operandi in life? Life awakens you to what is beyond your understanding. For me that was peace the very ideal I dreamed about.

I see nothing and no-one as imperfect or genetically inferior or unwanted. I see only purpose in life, in every action and know there is an equal and opposite reaction. Rebalancing the opposites. This is homeostasis expanding life to ensure evolution. Reverse the word ‘evolution’ and you get – no-it-u-love. The reverse in truth is the mirror image that dyslexia showed me. I see past the mask and can feel the mirror in reflection on same same but different. All life is perfectly imperfect by design as what we don’t understand IS the possibility awaiting expression. Everything that unfolds is perfect, until you see this you remain a victim or in fear. Fear is false evidence appearing real. Imagine a life where even fear is seen as perfect. What questions did it evoke? What did you want to improve? What was your desire? You are not meant to get it right, it is a journey of self discovery where your very life is your message. What message are you sending life? That is what COVID is asking. Do you live in fear or love? Do you conform or reform? Do you awaken or stay asleep? Is it perfect or imperfect given your purpose? You decide what it means. You decide what holds value eugenics or nature?

Now to a La Trobe Philosopher. May Janna’s response be understood as imperfectly perfect.


02/2019

Gene-edited babies: a philosopher’s view

Janna Thompson – Professor of Philosophy, La Trobe UniversityShare

A second woman is said to be pregnant with a gene-edited baby in China, according to reports this year. It follows revelations last November that gene-edited twins had been born, which caused much debate.

One of the fears expressed by scientists is that gene editing may result in unwanted side effects.

But beyond the health and medical concerns, what are the philosophical issues at stake here when it comes to gene-editing babies?

Undesirable mutations introduced by gene editing to sperm, eggs or early-stage embryos could be reproduced in future generations. But future generations are unable to give their consent to the risks being taken, says Francis S Collins, the former leader of the Human Genome Project and now director of the US National Institutes of Health.

The Chinese scientist responsible for the gene-edited babies aimed to produce offspring of HIV-infected fathers who will be naturally resistant to the virus.

Eliminating disease and other harmful conditions may be a laudable aim, and most people would welcome a world in which no one has to suffer from, for example, haemophilia, muscular dystrophy or other genetically carried disorders and disabilities.

Should we, shouldn’t we

Let us assume that the health risks of gene editing are exaggerated or can be eliminated. While designer babies may be some way off, we need to start thinking now about how far should we go in editing away undesired characteristics or adding those that are desirable.

Any prospective project to enhance the qualities of the population recalls wrongs committed by government-sponsored eugenics programs in the United States and Canada, as well as Germany in the early 20th century.

In 1939, the Australian government also passed legislation to institutionalise or sterilise those deemed deficient, but it was never put into practice.

Some philosophers argue there is nothing wrong with allowing parents to select characteristics that they want their children to have. In his 2010 book Enhancing Evolution, the UK bio-ethicist John Harris says this is ethically no more problematic than giving a child a good education.

Australian philosopher Julian Savulescu argues that parents ought to use whatever technology is available to select the children whose characteristics will enable them to live the best lives.

These philosophers fail to take seriously the social problems that genetic enhancement is likely to cause.

Only the wealthy

Use of the technology is going to be expensive – especially when it is first introduced – and only wealthy parents will be able to afford to enhance their children.

The result may not be as bad as imagined in the 1997 science fiction film Gattaca, which portrays a society divided between the genetically privileged and those whose lack of enhancement consigns them to menial jobs.

But genetic enhancement is likely to make societies more unequal, and equality of opportunity will become more and more meaningless.

Let us imagine that all parents in a future society will be able to choose the characteristics of their children. Some philosophers worry that babies designed to meet the demands of parents will make them into consumer products.

The German philosopher Jürgen Habermas argues, in his 2014 book The Future of Human Nature, that genetic engineering will restrict the ability of individuals to make free choices.

Even if this is not so, it may drastically affect parent/child relationships by undermining a basic ethical principle: that parents should accept, love and care for whatever children they have.

What parents want

Genetic engineering is likely to heighten parental expectations. If parents don’t get the child of their choice – if the qualities they selected do not materialise or if the child fails to make use of them – their disappointment could lead to denigration or rejection.

Ethical doubts about genetic engineering motivate a view that many philosophers favour: that genetic therapy to eliminate disease and disability is ethically acceptable, given that the risks can be overcome.

But genetic enhancement is ethically problematic. The line between enhancement and therapy is difficult to draw.

Studies show people who are physically attractive are likely to earn more than those considered to have below-average looks. Does this mean “ugliness” is a disability that ought to be corrected by genetic engineering?

Or, similarly, is having a below-average IQ a disability, something that should be subject to change through gene-editing?

Gene editing and prejudice

Should parents be able to engineer the skin colour of their children to try to circumvent the social bias they might otherwise experience? Being black creates serious disadvantage in some societies.

But it is a mistake to treat social problems as if they were the fault of properties possessed by some individuals.

If people are intolerant, then catering to their prejudices will not make them more tolerant. They will find other reasons or objects for their intolerance.

If less attractive people are disadvantaged or people of low intelligence are belittled, we ought to question our standards and behaviour. If black people face social discrimination, we should fight against racism rather than seek to accommodate it.

Behind this response lies the liberal conviction that we ought to welcome human differences and respect individuals in all their variety and ways of being.

To eliminate disease and severe disabilities is a worthy objective. No person should suffer them. But to eliminate human variety is not only risky; it eliminates perspectives that enrich us.

Originally published on The Conversation.