Is it right to edit the genes of an unborn child?

Is it right to edit the genes of an unborn child?
Opinion + AnalysisPolitics + Human RightsScience + Technology
BY Aisyah Shah Idil ethics 30 NOV 2018
It’s been called dangerous, unethical and a game of human Russian roulette.
International outrage greeted Chinese scientist He Jiankui’s announcement of the birth of twin girls whose DNA he claims to have altered using the gene editing technique CRISPR. He says the edit will protect the twins, named Lulu and Nana, from HIV for life.
“I understand my work will be controversial”, Jiankui said in a video he posted online.
“But I believe families need this technology and I’m ready to take the criticism for them.”
The Center for Genetics and Society has called this “a grave abuse of human rights”, China’s Vice Minister of Science and Technology has issued an investigation into Jiankui’s claims, while a UNESCO panel of scientists, philosophers, lawyers and government ministers have called for a temporary ban on genetic editing of the human genome.
Condemnation of his actions have only swelled after Jiankui said he is “proud” of his achievement and that “another potential pregnancy” of a gene edited embryo is in its early stages.
While not completely verified, the news has been a cold shock to the fields of science and medical ethics internationally.
“People have naive ideas as to the line between science and application”, said Professor Rob Sparrow from the Department of Philosophy at Monash University. “If you believe research and technology can be separated then it’s easy to say, let the scientist research it. But I think both those claims are wrong. The scientific research is the application here.”
The fact that we can do something does not mean we should. Read Matt Beard and Simon Longstaff’s guide to ethical tech, Ethical By Design: Principles of Good Technology here.
The ethical approval process of Jiankui’s work is unusual or at least unclear, with reports he received a green light after the procedure. Even so, Sparrow rejects the idea that countries with stricter ethical oversight have some responsibility to relax their regulations in order to stop controversial research going rogue.
“Spousal homicide is bound to happen. That doesn’t mean we don’t make it legal or regulate it. Nowadays people struggle to believe that anything is inherently wrong.
“Our moral framework has been reduced to considerations of risks and benefits. The idea that things might be inherently wrong is prior to the risk/benefit conversation.”
But Jiankui has said, “If we can help this family protect their children, it’s inhumane for us not to”.
Professor Leslie Cannold, ethicist, writer and medical board director, agrees – to a point.
“The aim of this technology has always been to assist parents who wish to avoid the passing on of a heritable disease or condition.
“However, we need to ensure that this can be done effectively, offered to everyone equally without regard to social status or financial ability to pay, and that it will not have unintended side effects. To ensure the latter we need to proceed slowly, carefully and with strong measurements and controls.
“We need to act as ‘team human’ because the changes that will be made will be heritable and thereby impact on the entire human race.”
If Jiankui’s claims are true, the edited genes of the twin girls will pass to any children they have in the future.
“No one knows what the long term impacts on these children will be”, said Sparrow.
“This is radically experimental. [But] I do think it’s striking how for many years people drew a bright line at germline gene editing but they drew this line when gene editing wasn’t really possible. Now it’s possible and it’s very clear that line is being blurred.”
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BY Aisyah Shah Idil
Aisyah Shah Idil is a writer with a background in experimental poetry. After completing an undergraduate degree in cultural studies, she travelled overseas to study human rights and theology. A former producer at The Ethics Centre, Aisyah is currently a digital content producer with the LMA.
BY ethics
Perils of an unforgiving workplace
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Perils of an unforgiving workplace
Opinion + AnalysisBusiness + Leadership
BY The Ethics Centre ethics 30 NOV 2018
Public relations executive, Justine Sacco, thought she might get a few laughs when she tweeted what she thought was a poor-taste joke to her 170 followers. Instead, she was sacked from her job and found herself in the centre of a social media shaming frenzy.
Sent as she embarked on a flight, the tweet posted by Sacco in 2014 read: “Going to Africa. Hope I don’t get AIDS. Just kidding. I’m white!”.
This is the nature of the internet, where a crass and thoughtless “joke” is likely to taint Sacco’s whenever anyone types it into a search engine.
But while the internet may not forget, her employer has already forgiven her. US-based internet and media company IAC, rehired her after she spent a few years working elsewhere.
IAC CEO, Joey Levin, welcomed her back. “With one notable exception, Justine’s track record speaks for itself,” he wrote in a statement.
Business leaders are often encouraged to be tolerant of human frailties. Influential Harvard Business School professor, Rosabeth Moss Kanter, has written:
“Leaders must be firm and foster accountability, but they also must know when to forgive past wrongs in the service of building a brighter future”.
What about hiring a former criminal?
Humans are fallible. We do dumb stuff, we can take leave of our senses in times of stress, we let our emotions get the better of us and we make bad choices.
However, while employers may be prepared to forgive thoughtless actions made with “a sudden rush of blood to the head”, a criminal’s past may be something altogether different.
A substantial segment of the population will have some sort of criminal record, ranging from minor traffic and drug offences to serious jail time. Statistics from the UK, Canada and the US indicate around 20 to 25 per cent of their male populations and up to six per cent of women have a criminal record. Australia is assumed to be similar.
If employers insist that all their employees must have a “clean slate”, a lot of people will be left on the employment scrap heap. This discrimination is illegal anyway, unless said conviction prevents them from performing the inherent requirements of the job.
One person working to get former offenders back into the workforce is Rabbi Dr Dovid Slavin, CEO of Our Big Kitchen – a Bondi-based charity that trains and employs prisoners and former offenders. Last year, they distributed more than 80,000 meals to disadvantaged people.
Rabbi Slavin says work release programs are only available to around 1.5 per cent of inmates, who are in the final year of their sentence.
Once they are looking for employment, former inmates will have a more successful relationship with an employer if they are open about their criminal past, he says.
“The most important thing that I found is where an inmate is able to freely talk about what he or she did and they’ve come to terms with it,” he says.
“If they feel hard done by the system, rightly or wrongly, it can be very difficult for them to integrate and move forward because they carrying baggage from the past.”
If they are coming in a work-release program, they must be willing to have their bags checked, for instance. “They can’t be overly-precious about how they are treated,” he says.
“We here [at Our Big Kitchen] always treated them like family, treated them with a great deal of respect and comfort and that made them want to be extremely co-operative and extremely forthcoming.”
Two reasons to offer a second chance
The CEO of employment assistance organisation Joblink Plus, Christine Shewry, says employers have two compelling reasons to give former prisoners a second chance.
Firstly, people with troublesome backgrounds can make outstanding employees if they get the right support and training, says Shewry, whose service helps people who face barriers in the employment market in regional NSW.
“Those people who have not had the best start in life, who have had a challenge, can become amazing employees because of the discretionary effort they will put in when you give them a go.”
As a second motivation, offering redemption can have transformative effects on society.
In Glasgow, once regarded as the “murder capital” of Europe, non-sexual crimes of violence have fallen by 44 per cent over ten years – a feat credited to a police-initiated program to get offenders off the streets and into training and work.
Scotland’s police force adopted a public health approach, co-operating with the education system and health service to tackle the root causes of crime.
According to researchers Eileen Baldry and Sophie Russell at UNSW, the majority of prisoners in Australia have severely disadvantaged backgrounds, with serious health, mental health and disability concerns.
They say 60 per cent of inmates are not functionally literate or numerate, 64 per cent have no stable family, and 60 per cent of males and 70 per cent of females have a history of illicit drug use.
Shewry points to the effectiveness of back-to-work programs in turning people’s lives around. She says Joblink Plus has run programs for ex-offenders where 70 per cent have never reoffended, while national recidivism rates are at 44.8 per cent (the percentage of prisoners released during 2014-15 who returned to prison within two years
Rabbi Slavin says out of more than 40 former inmates employed through his program, none have returned to jail.
“If we, as a society, continue to shun anybody who has a criminal past, then we are really sentencing ourselves to that person having to re-offend because of the way he or she will be able to support themselves emotionally and physically and financially, he says.
“When somebody comes out of out of incarceration, very often their families have abandoned them, very often they’ve abandoned themselves. They don’t believe in themselves anymore.”
They have to adjust to a world where a correctional officer no longer dictates their every move. It could take 20 minutes for them to choose between soft drink brands because they are unused to making decisions, he says.
Managing the risk
Former CEO of logistics group, Toll Holdings, Paul Little, has been a strong supporter of helping former inmates into work. Under his stewardship, Toll ran a program, Second Step, which has helped more than 500 people to move from drug addiction and jail into permanent employment.
Little told The Australian newspaper that he regretted being unable to convince other ASX 200 companies to introduce a similar scheme. (Neither Little of Toll Holdings would comment for this article).
“It is a massive disappointment. People aren’t willing in business life, in corporate life, even in government, to try to manage that risk. We saw an opportunity for people to become amazing employees, and invariably they did.”
Shewry says some people, who are assessed by the government as ready to work, will have to be closely supervised if their criminal history dictates that. Those jobs may be in manufacturing, labouring, food processing, or rural work.
Emily Roy, Joblink Plus’ executive manager for community partnerships says is not a simple matter to place former offenders in work. “One of the big supports that we can offer employers is to not pretend that everything is going to be fabulous all the time,” she says.
“There are a lot of practicalities when working with someone who, for example, has a history of child-related offences. But we do work with them and there are employers who are able to do that because there is work that needs to be done. So, you put things in place and there is no opportunity to engage with children at all.”
Roy points out that employer concerns about hiring former offenders are not always rational. “It is interesting that we get concerned about the people who are known to us as being offenders – so these are known entities that we can manage, that we can support and put things in place.
“What is our community response as a whole to people who aren’t known to be doing that?”
Employers, have you discriminated?
When assessing the application of a person with a criminal record, questions that an employer may need to address might include:
1. Has the applicant or employee been informed about the possible relevance of a criminal record to the position?
2. Does the organisation have clear procedures for making decisions about applicants with a criminal record? For example, who makes the decision and how is it made?
3. Does the applicant or employee’s specific criminal record mean that he or she cannot fulfil the inherent requirements of the particular job?
4. Has the applicant or employee been given an opportunity to explain the circumstances surrounding any criminal record?
5. Is there an avenue for the employee to appeal the decision?
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