Yesterday, the more interesting question of damages under this provision was resolved. A senior consultant to the Presidential Commission for the Study of Bioethical Issues, Professor Paul A. Lombardo testified as an expert witness for the plaintiffs about the harms arising from acquisition of genetic information.
The lead attorney for the plaintiffs, Amanda Farahany (my very talented sister), delivered what I (and clearly the jury) found to be a powerful closing argument. She laid out a roadmap for the jury on to calculate compensatory damages in the case, including emotional pain, inconvenience, and loss of enjoyment of life. She focused the majority of her remarks on compensating the plaintiffs for the mental anguish they suffered over fears about potential misuse of their genetic information and asked the jury to send a clear message about genetic privacy with punitive damages.
Here are a few snippets from her summation:
“So how do you measure these damages – for how Jack & Dennis were harmed when their DNA was requested – how they felt then in that room, how they felt after – through today – and the mental anguish they are more likely than not going to feel into the future …… You heard from Professor Lombardo. We have technology to predict, prevent or treat diseases early. Most people are afraid to get this genetic testing – for exactly the fears that you heard that Jack & Dennis had – fears of discrimination, fears of being targeted for a crime, fears of health insurance being cancelled – or their children being harmed. You heard that GINA was designed to protect against this fear.So if someone says – there is no sense in giving all that money for fear – you tell them “fear is the worst harm in this case.” “It is what this law is about” – and Jack & Dennis – they are more likely than not going to feel this fear for 50-60 years into the future. As bad as all the other harms are – the fear they have felt – and will more likely than not feel into the future – the kind of fear that Professor Lombardo told us this law was in place for – that is the worst harm. We told you that the emotional distress, the suffering, the difficulty and the loss of enjoyment of life was just a part of the whole harm – and this fear – the past and future fear – it is at least four times greater than the rest of the harm…… [T]he biggest purpose here – is to deter others from doing this. There is no other way to make this kind of wrongdoing stop – because Congress and the law assume you will take care of it – and have designated you to do it. NO one else can. I am not going to tell you what your verdict should be on this – this is your decision to make….… Your verdict must be large enough so that the publicity goes across the country so that EVERY business hears about this. That all 122 million people employed in the United States hears about it…. [I]n order for that billion dollar company to listen – in order to deter them – you must make them wake up and pay attention.”………”I want you to come with me now to look from the top of that mountain – and look forward to the next fifty years. Look one way – and you see a bleak future — Atlas and companies like it will be high fiving each other – talking about how they can get away with breaking this law without compensating for the harm they cause. Corporate lawyers will be teaching their clients that this law means nothing — you can break this law. It’s not going to cost you anything to violate it. One where employers are able to request people’s DNA. Give that DNA to other companies. Companies who make a profit off selling DNA. And the employers can do that because this jury has told them that doing that is free or its cheap – taking our DNA and doing whatever you want to do with that – who we are – that’s for sale. A future with no safety to offer. People fear genetic tests. Advancements in healthcare are stifled.But look the other way – the way built on the verdict you can provide — And see the other future. Employers understand that our DNA — who we are — is not for sale. That requesting DNA causes harm. That it caused harm here. And that they have to pay for that harm. And that if they request DNA – if they violate our civil right to be free from employers requesting our DNA – that they will have to pay the consequences of that harm. Every employee – no matter where they work – will be able to say to their employer who pulls them into a closed off room – You Can’t request this from me. And no employer would even think to ask.A future where employees are safe from this type of intrusion. Where employers know that the DNA we leave behind is protected. Where our genetic privacy is protected. Where people feel comfortable taking a genetic test – and where scientists have the DNA to cure diabetes, autism, cancer, Alzheimer’s. So that our children – and our children’s children’s have the advances in healthcare that GINA was designed to create.And a future where other employers — where all employers – even those billion dollar companies — will say – it’s not worth doing this.…We ask you to shout out – and to listen as your voice echoes across the land – by returning a true and just verdict.”
Shout out they did. The jury awarded Dennis Reynolds $225,000 in compensatory damages and $250,000 in compensatory damages to Jack Lowe. They also awarded a whopping $1,750,000 in punitive damages, to stop Atlas from requesting its employees’ DNA in the future, and to send a crystal clear message that they value the privacy of their DNA.
In the past, I questioned whether GINA has teeth. If this case is any indication, it has very real teeth indeed. And for those who believe the public doesn’t value privacy? When it comes to genetic privacy, we can now hear “yes, we do!” echoing across the land.