Chapter 9: Genetic Choices

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Welcome to the Deep Dive.

Today we're looking at a really complex set of source materials all focused on the ethics of genetics.

We're going to distill the essential insights for you.

Right, we're diving into genetic choices.

And it's a field where, honestly, the science seems to be moving faster than our ability to figure out the morality.

That's exactly it.

It's really striking how the sources show science has sort of outpaced conventional moral understanding here.

Yeah, and this topic, it touches on almost every big ethical concern you can think of.

Autonomy, doing good beneficence, justice,

confidentiality, even personhood.

So our goal today is to unpack the key arguments.

We'll look at genetic testing, gene therapy, stem cell research, all based strictly on the material we've reviewed.

Exactly.

We're not bringing in outside opinions, just what's in the text.

And the questions raised are, well, they're tough.

Things like, should we even test for diseases we can't treat, like Huntington's?

Or, you know, is altering genes fundamentally playing God?

That's a big one that comes up.

And another really sensitive point.

Do these practices end up discriminating against people with disabilities?

Yeah, that's a critical perspective we need to cover.

So let's maybe start with the first big area, genetic testing,

and the sort of conflicts that arise around knowing or warning others.

Okay.

So what are the common types of testing the sources mention?

Well, there's newborn screening.

Think of the mandatory PKU test that's phenylketonuria.

Catching it early prevents severe intellectual disability.

So clear benefit there.

Right.

Treatable condition, early detection is key.

Then you have carrier testing.

This is often for couples planning a family.

They might be carriers for something like cystic fibrosis or Tay -Sachs, autosomal recessive disorders, but show no symptoms themselves.

Okay, but here's where it gets complicated, right?

The sources emphasize that these tests, they rarely give a simple yes or no answer.

Exactly.

That's a crucial point.

You usually get probabilities, not certainties.

So it's not like you will get this disease.

It's more like a risk assessment.

Precisely.

The classic example given is the BRCA1 or BRCA2 gene mutation.

Finding the mutation means a woman has a significantly higher risk.

The text says greater than 80 % of developing breast cancer by age 70.

80 % is huge, but it's still not 100%.

Right.

It's not a guarantee she'll get it.

And someone without the mutation isn't guaranteed not to get it either, though their risk is much lower.

And the sources talk about the psychological impact of this uncertainty.

Absolutely.

Depression, anxiety, even survivor's guilt for those who test negative when family members test positive or just a sense of fatalism.

It could be really heavy regardless of the result.

Which brings us to that really difficult choice.

Like with Huntington's disease,

it's incurable.

It hits later in life.

Do you want to know?

The sources frame it as choosing between knowing, confronting life with eyes wide open, as they put it, or living without that specific shadow, maybe holding onto hope.

That seems like a deeply personal decision, purely about autonomy.

It is for the individual.

But then what happens if knowing your status has implications for your relatives, your siblings, your children?

Ah, right.

This is where the conflict between autonomy, your right to privacy, and beneficence, the duty to prevent harm, really comes into play.

Exactly.

The text gives a case study.

Maria, I think, she's diagnosed with Wilson's disease.

It's recessive, but importantly, it's treatable if caught early.

Okay.

Treatable is key.

Yes.

But Maria insists on privacy.

She feels ashamed, maybe.

Doesn't want anyone to know.

But her siblings, they each have a one in four chance of having the same condition, and treatment works best if started before symptoms appear.

So what's the physician supposed to do?

Maria refuses to tell them.

Well, the typical approach, according to the sources, is for the physician to strongly urge the patient to inform their relatives themselves, trying to respect confidentiality while still fulfilling that duty to warn, or at least facilitate warning.

Is that enough, though?

If the siblings get sick later because they weren't warned, it feels like a really difficult ethical tightrope.

It is.

The legal stance often favors patient confidentiality, unless the danger is very direct, serious, and avoidable.

But ethically, there's immense pressure on the physician to find a way.

Okay, let's shift slightly.

What about unwanted information?

Like, finding out about an Alzheimer's risk incidentally from some other test?

Should doctors reveal that if it wasn't what the test was for?

That's another tough one.

Paternalism versus autonomy again.

The argument against revealing it is, well, it causes psychological harm, anxiety, maybe depression, and there's no cure, so no immediate medical benefit to knowing.

Right.

That's the paternalistic view.

Protect the patient from potentially harmful information.

But the counter -argument is pure autonomy, isn't it?

Pretty much.

It says paternalism is generally rejected in modern ethics.

Patients have a right to know their own medical information full stop, even if the news is upsetting.

It seems like autonomy usually wins out in these debates in the source material.

It's a very heavily weighted principle, yes.

But let's connect this to the idea of justice.

What happens when this genetic information gets out, maybe to employers or insurers?

Ah, genetic discrimination.

That's a huge concern.

Using someone's genetic profile against them.

Exactly.

Is it fair, is it just to discriminate against someone who's perfectly healthy now?

Based on a risk factor they have absolutely no control over?

Maybe just to save money?

That seems fundamentally unfair.

It's not like choosing to smoke.

It's just the genes you were born with.

Precisely.

The point raised.

And this fear led to actual legislation, right?

Yeah, Gina Fine, the Genetic Information Non -Discrimination Act of 2008.

The whole point was to stop insurers and employers from using genetic info to deny coverage or jobs.

So Gina aimed to protect people from being penalized for, say, having that APOE gene associated with higher Alzheimer's risk, even if they have no symptoms.

Okay, so we have laws trying to deal with discrimination after testing.

But what about the choices before birth?

This feels even more ethically charged.

It really is.

We're talking about prenatal testing that might lead to selective abortion, or PGD preimplantation genetic diagnosis, where embryos are screened before implantation.

And often the sources say these are the only options parents feel they have to avoid having a child with a very severe impairment.

The moral anguish must be immense.

Undeniably.

And this leads to a fascinating philosophical puzzle called the non -identity problem.

Right.

I remember reading about this.

The argument is kind of counterintuitive.

It says you can't technically wrong a child by bringing them into existence with a disability if their life is still worth living.

Because the only alternative for that specific child was never existing at all.

So you haven't made them worse off than they otherwise would have been.

It's logically complex, but it feels emotionally unsatisfying to some.

It does.

And that's where someone like Laura Purdy comes in.

She argues we have a positive duty, a duty to provide a minimally satisfying life.

Meaning we have a moral obligation to try and ensure any child we bring into the world has a reasonable shot at a decent life.

And this, she argues, can justify avoiding conception or birth if there's a very high risk of a severe condition, like Huntington's.

So one argument focuses on not harming an individual who exists, the other on a general obligation towards future children's well -being.

Sort of, yes.

But then there's another major criticism of all this screening.

The argument from disability advocates.

Exactly.

They argue that the whole practice of screening sends a message of disrespect.

It implies that lives with disabilities are less valuable, that it would be better if people like them didn't exist.

That's a powerful critique.

How do the sources respond?

Well, Jonathan Glover offers a counter.

He says aiming for a non -disabled child is compatible with respecting disabled people.

It's like treating illness.

We prefer health over sickness, but that doesn't mean we disrespect sick people.

So wanting a healthier child doesn't equate to devaluing those who aren't healthy.

That's Glover's point.

And then Jeff McMahon pushes the logic even further.

Oh yeah, the logical challenge.

Can you lay that out?

But McMahon basically says, look, if you think it's morally wrong to try and avoid having a disabled child through screening, then logically you must accept that it's morally permissible to deliberately cause yourself to have a disabled child when you could have had a non -disabled one.

Wow.

That's stark.

It is.

And since most people find deliberately causing a disability to be morally abhorrent, McMahon argues they have to concede that avoiding disability through screening isn't inherently wrong on those grounds.

That's a really clever philosophical argument.

It doesn't end the debate, I imagine, but definitely challenges the critics.

For sure.

And it moves us naturally from thinking about avoiding certain outcomes to thinking about actively intervening with genes.

Right.

Gene therapy.

Moving from just knowing to actually changing the genetic code.

The sources make a key distinction here.

First, there's somatic cell gene therapy.

Somatic meaning?

Body cells.

Exactly.

You're altering genes in, say, a person's lung cells or blood cells.

Crucially, these changes aren't passed on to their children.

They're not heritable.

And the ethical view on that?

Generally permissible, provided the potential benefits clearly outweigh the risks.

It's seen as basically a form of advanced medicine.

Okay.

But then there's the other type.

Germline gene therapy.

This is the controversial one.

Here, you're modifying genes in sperm, eggs,

or very early embryos.

Meaning the changes are inherited.

Passed down through generations.

Yes.

And that's why it's currently seen, by most, as morally unacceptable.

The safety concerns are massive.

We just don't know the long -term effects.

We could inadvertently damage the human gene pool.

This sounds like it gets right into the territory of eugenics.

It absolutely does.

Eugenics is just a deliberate attempt to improve the human genetic makeup.

But the sources distinguish between two types.

Okay.

Negative eugenics is about preventing or treating genetic diseases.

Like using gene therapy to fix a disorder.

Many see this as morally acceptable, even obligatory.

And the other?

Positive eugenics.

This is about trying to enhance normal traits.

Making someone smarter, taller, more athletic than they would naturally be.

Seeking improvements beyond just fixing disease.

And that's where the big ethical fight is, right?

The repair versus enhancement debate?

That's the heart of it.

Walter Glennon, for instance, argues strongly against enhancement.

He thinks it's morally wrong.

Why?

What's his reasoning?

His main worry is justice.

Enhancements making already healthy people better would likely be expensive.

Only the rich could afford them.

Creating a genetic divide.

Exactly.

An unfair advantage in things like intelligence or appearance.

Undermining the ideal of basic human equality.

It gives an edge in what he calls competitive goods.

But not everyone agrees with drawing that line so sharply.

No.

John Harris basically rejects the distinction between therapy and enhancement.

At least when health is involved.

How so?

He argues, look, if using penicillin to cure an infection is good, maybe even mandatory, why isn't an enhancement that protects you against disease or significantly extends your healthy lifespan also good, maybe even mandatory?

So for Harris, if it promotes health or prevents illness, whether you call it therapy or enhancement doesn't really matter morally.

Pretty much.

He thinks the distinction is fuzzy and maybe not that useful.

Is there anyone who pushes it even further?

Oh yes.

Julian Savilescu.

He goes as far as arguing for a moral obligation to enhance our children.

An obligation?

Wow.

His argument is basically we all agree we should try to give our children the best start in life, right?

Health, good environment, education.

Sure.

Generally.

So is safe genetic enhancements become available that could give them a better chance at a good life, better health,

maybe cognitive advantages?

Wouldn't we be obligated as parents to provide those just like we provide good nutrition or schooling, assuming it's safe, of course.

That's a provocative stance.

Maximizing genetic opportunity as a parental duty.

Very much so.

It shifts the debate significantly.

Let's pivot to another area with huge potential but also deep ethical divides.

Stem cells.

Right.

We hear a lot about the potential treating Parkinson's, heart disease, diabetes,

but the controversy is intense.

It is.

And it mostly revolves around embryonic stem cells or ESCs.

Can you remind us what those are?

They come from the blastocyst.

It's a very early stage embryo, maybe five days old, tiny like the dot on an eye.

The key thing is these cells are pluripotent.

Meaning they can turn into any type of cell in the body.

Exactly.

Nerve cells, muscle cells, liver cells,

any kind.

That's why they have such immense therapeutic potential.

And this is different from adult stem cells.

Yes.

Adult stem cells or ASCs are found in developed tissues like bone marrow.

They can regenerate tissue, but their potential is more limited.

They're generally constrained to becoming specific cell types.

So the pluripotency of ESCs is the big deal medically, but the ethical problem is?

The sources.

To get ESCs, you have to destroy the blastocyst.

And where do these blastocysts come from?

The sources list a few main places.

Leftover embryos from IVF treatments, sometimes fetal tissue from abortions, or even embryos created specifically for research purposes, sometimes through cloning techniques, therapeutic cloning.

So the destruction of the embryo is the absolute core of the moral debate.

It is.

Everything hinges on the moral status you assign to that blastocyst.

The sources lay out three main positions.

Okay.

What's the first one?

Full personhood.

This view, held by groups like the Pontifical Academy for Life, argues that an embryo is a human being, a person, right from conception.

So it has a full right to life?

Yes.

Therefore, destroying it for research is considered gravely immoral.

They even argue that using stem cell lines created by others who did the destruction is also wrong, what they call proximate material cooperation.

Meaning you can't ethically benefit from an immoral act, even if you didn't commit it yourself.

That's the idea.

Okay, position two is the complete opposite.

No moral status.

Exactly.

This view treats the blastocyst like any other group of human cells.

It doesn't have rights or interests.

So using it for research that could alleviate suffering is perfectly permissible, even encouraged.

A purely utilitarian calculation almost.

Potential benefits outweigh the status of the cells.

You can see it that way.

Now the third position tries to find a middle ground.

Intermediate status.

Right.

Championed by thinkers like Bonnie Steinbach.

She argues embryos aren't persons they don't have consciousness, interests, ends of their own, as she puts it.

But they're not just nothing either.

Correct.

They are potent symbols of human life and deserve respect.

This means we shouldn't use them frivolously.

Like the sources mention making jewelry or a trivial high school experiment.

But using them for serious medical research.

That would be permissible under this view.

If the potential benefits for treating disease or saving lives are significant enough.

It's about balancing respect for this symbolic value with the potential for great good.

Three very different ways of looking at the same biological entity.

Okay, let's bring this back to autonomy for our last main section.

But this time focusing on the child's future autonomy.

Yes, this is a fascinating twist.

The sources present a scenario that really challenges the standard non -directive approach in genetic counseling.

What's the scenario?

It involves deaf parents who identify strongly with deaf culture, seeking genetic counseling or PGD specifically to increase their chances of having a deaf child.

Wow.

So they're choosing what many would consider a disability.

From their perspective, they're choosing a culture and identity.

But it forces counselors into a difficult position.

Do they just provide the technical means, respecting parental autonomy?

Or is there another principle at stake?

And that principle is?

The child's right to an open future.

This idea, building on thinkers like Joel Feinberg and elaborated by Dena Davis,

suggests parents have obligations to protect their child's future ability to make choices.

How does that work?

It involves what are called rights and trust.

These are rights the child can't exercise now, like the right to choose their religion or, crucially here, perhaps the right to choose their future path in life, but which parents must safeguard for when they become adults.

So how does this apply to the deaf parents scenario?

The argument from Davis's perspective is that deliberately choosing deafness for a child, even with the best intentions regarding culture, might irreversibly limit that child's future options, career choices, ability to engage with the hearing world.

It potentially closes off avenues, violating their right to an open future.

It limits their future autonomy for the sake of the parent's current autonomy.

That's the core tension.

And this principle also applies back to testing children for adult onset conditions.

Like Huntington's again.

Exactly.

The right to an open future argument suggests parents shouldn't test their minor children for untreatable adult onset diseases.

Why?

Because it preserves the child's own future right to decide if and when they want that potentially life -altering information.

Precisely.

It keeps that future choice open for them, protecting their future autonomy over profoundly personal knowledge.

Okay, that makes sense.

So wrapping up, how do the big ethical theories we often discuss framework all these different issues?

Well, very briefly.

Utilitarianism, focused on maximizing overall happiness or well -being, would likely favor genetic testing, gene therapy, maybe even enhancement and ESC research, if the net benefits to society seem to outweigh the harms and risks.

So it's a cost -benefit analysis, basically?

In essence, yes.

Natural law theory, on the other hand, often emphasizes the inherent value of human life from conception.

Which means?

It would likely find things like prenatal testing leading to abortion,

PGD involving embryo selection, and ESC research that destroys embryos to be morally wrong, violating the right to life.

Somatic gene therapy to cure disease might be okay, but germline changes or embryo destruction generally wouldn't be.

And Kantian ethics.

Kantian ethics, with its focus on respecting persons as ends in themselves, strongly supports patient autonomy, the right to know or not know,

confidentiality, freedom from discrimination.

So it lines up well with JNA, for example?

Yes.

The tricky part for Kantianism is the status of the embryo.

If an embryo is considered a person, destroying it is wrong because you're not treating it as an end in itself.

If it's not considered a person, then the ethical calculus changes, though some Kantians might still argue against certain uses based on respect.

Okay, so we've covered a lot of ground.

From the dilemmas of knowing your genetic code, to the ethics of changing it, to the status of the earliest forms of human life.

Yeah, the key tensions really seem to be that constant pull between individual autonomy and the duty to prevent harm to others in testing.

Then there's that philosophical divide.

Is it okay to just fix things?

Or can we, should we, enhance human capabilities beyond the norm?

And finally, that fundamental disagreement about the moral status of the embryo, which drives so much of the stem cell debate.

So a final thought for you, our listeners, circling back to that non -identity problem we discussed.

Right.

If choosing not to bring a child with a severe disability into existence doesn't technically wrong that specific child, because they wouldn't have existed otherwise.

Is the action still potentially right or wrong based on other reasons?

Is there a general moral reason, maybe a utilitarian one, to simply try and reduce the total amount of suffering in the world, even if it means choosing which potential lives come into being?

Are we obligated to minimize future suffering, even if it means making choices that prevent certain individuals from ever existing?

That's a really deep one to chew on.

Are our obligations only to actual people, or do we have obligations regarding the kind of world and the kind of lives we choose to create?

A challenging question indeed.

Definitely something to think about.

Thank you for joining us for this deep dive into the complex ethics of genetic choices.