Jump to content

Tissue issue


  • Please log in to reply
17 replies to this topic

#1 Helena Handbasket

Posted 20 December 2012 - 01:14 PM

When does ownership of your body end?

I just finished reading The Immortal Life of Henrietta Lacks (Henrietta Lacks died of cervical cancer. The cells were taken from her when she was still alive and were the first human cells that were able to be grown in a lab. They are still used worldwide and contributed to many medical discoveries such as vaccines and how cells work. Her cell line is a multi-billion dollar business. The family never recieved a single cent)   It raised a number of issues that have got me thinking.

My understanding is that when you have a biopsy done, or blood drawn, or anything like that. The cells/tissues are kept and may be used for research purposes. The cells from Henrietta Lacks were used to learn about AIDS, create vaccines, sent into space, and were used to test nuclear weapons.

What say should people have over these parts of their bodies that have been removed? Should you receive part of the profits if your cells end up being pretty unique and end up being bought and sold for a lot of money?

Edited by Helena Handbasket, 20 December 2012 - 01:16 PM.


#2 Angelina Ballerina

Posted 20 December 2012 - 03:02 PM

I can only hope that one day I have a biopsy that makes such an amazing contribution to medical science.

In pathology labs and hospitals, blood samples are kept for a week or two in case further tests are needed and then they are destroyed. I think you need to provide consent for samples to be used for research.

I don't expect my family to get any money or reward for my donated organs and view this the same way.

#3 Helena Handbasket

Posted 20 December 2012 - 03:20 PM

Would you be equally ok with your cells being used to test and/or aid the developmentd of nuclear weapons or methods of biological warfare?

#4 Helena Handbasket

Posted 20 December 2012 - 03:28 PM

QUOTE (Madame Catty @ 20/12/2012, 04:19 PM) <{POST_SNAPBACK}>
I'm not familiar with the story.  Did she give permission?  Do the family have sour grapes?

How much profit would there really be based on just her cells?  Were they some how unique, different to others?  Or could any cells have been used?  I'm not sure how it could be concluded that her cell line alone is a multi-billion dollar business.  What about the guys doing the work; developing, discovering?  

I also think it's a pretty amazing contribution.


No. She didn't give permission. The family did have 'sour grapes' as at one point, they were paying a buttload of money (they were poor and had no health insurance) for medication that was created as a result of their mothers cell cultures. (there are many other issues as well)

It certainly is a multi-billion dollar business. "Henrietta’s cells were the first immortal human cells ever grown in culture. They were essential to developing the polio vaccine. They went up in the first space missions to see what would happen to cells in zero gravity. Many scientific landmarks since then have used her cells, including cloning, gene mapping and in vitro fertilization." from Smithsonian.com. The book mentioned a single vial of her cells being worth well over US$100, labs all over the world use these cells.

Edited by Helena Handbasket, 20 December 2012 - 03:29 PM.


#5 Chief Pancake Make

Posted 20 December 2012 - 03:30 PM

From what I remember the tissue samples were taken in the USA back in 1950ish?  Laws about consent were pretty much non existant then.

I Australia we have the tissue act which is very strict about getting consent for samples and prohibits the sale  of any tissues or organs.

#6 HRH Countrymel

Posted 20 December 2012 - 03:40 PM

QUOTE (Chief Pancake Make @ 20/12/2012, 04:30 PM) <{POST_SNAPBACK}>
From what I remember the tissue samples were taken in the USA back in 1950ish?  Laws about consent were pretty much non existant then.

I Australia we have the tissue act which is very strict about getting consent for samples and prohibits the sale  of any tissues or organs.



Yes the damn human tissue act meant I couldn't bring my gallstones home!  I have seen them cut and polished before and really wanted to use them in my jewellery!

I have signed consent forms that allow our embryos (if there are any left over) to be used in clinical experimentation, so I think I'd also be fine if they wanted to use my tissue/blood/etc.

#7 Acidulous Osprey

Posted 20 December 2012 - 03:44 PM

It's a fascinating book which raises many issues.

Then?  I think the family should have been given a share in the money made from Henrietta's tissue.  Now?  It would not occur to me to ask for money but I think the mapping of the human genome has changed a lot of perceptions.

But that family were poor and lied to and it is a terrible story.

#8 Justaduck

Posted 20 December 2012 - 03:50 PM

Wow no I have no idea what can be done with my blood except test it. I know it is kept for a while in case they order more tests on it, but that was all I am aware of

#9 Liv_DrSperm_sh

Posted 20 December 2012 - 04:00 PM

I think it would be an honour to make such an awesome contribution to science and medicine.

But, I suppose the issue here is consent. Of course this happened before the issue of consent, indeed before patients were considered important parts of the therapeutic alliance! I believe that consent to use tissue should always be sought and gained, and the law now agrees with me.

It's such an interesting story - I actually used HeLa cells in my research and never knew the story!

One more point - drugs and treatments in medicine are developed using MULTIPLE systems both cell culture, animal models and human testing. To say that Helen's family were paying money for treatments developed using her cells is ignoring all the other myriad cells, tissues, animals and human subjects that would have been used. So I think that aspect of it is pretty dodge!

#10 Helena Handbasket

Posted 20 December 2012 - 04:07 PM

It would be amazing if a persons cells lead to a cancer cure or another medical breakthrough. Those are all positive things. The HeLa cells were used in testing nuclear weapons though, so obviously not all research done was 'positive' and for the benefit of human kind.

If I ever discovered my cells had been used to help develop something like that, then I'd be horrified and would really struggle with it.

Also, with mapping the human genome, if someone mapped your genes, they also have 50% of your children's genes. When this information can be used to determine a persons risk of certain diseases etc. is it ethical for that information to be logged and stored when the information could potentially be used against you or your children (I know it is not legal now) to deny them health insurance or certain jobs just because someone once signed a piece of paper saying they could use their tissue for research?


Edited by Helena Handbasket, 20 December 2012 - 04:11 PM.


#11 BadCat

Posted 20 December 2012 - 04:12 PM

To be honest it wouldn't bother me at all.  Once it's out of my body I don't care what you do with it.  I don't consider it mine anymore.

I don't like the idea of being paiid for tissue and such. It seems a bit sick to me.

#12 Paddlepop

Posted 20 December 2012 - 04:18 PM

My DH works in medical research for a major university in conjuction with a large public hospital. He obtains blood samples from different patients every fortnight. He has actually collected some blood samples today.

One of the most important parts of the blood collection is the consent form and explaining what the blood will be used for. The patient can withdraw consent at any time and any blood or other product that has created from that patient's blood will be destroyed. It is completely against the university's ethics to use it for any purpose other than what the patient has agreed to.

Hopefully one day the blood samples will lead to a treatment or cure for the illness.



#13 FreeRangeMum

Posted 20 December 2012 - 04:32 PM

I feel that it is a contribution so I would not expect any remuneration. I would love my organs/cells to be used to make such wonderful scientific advances as discussed here!

#14 blackcat20

Posted 20 December 2012 - 05:13 PM

QUOTE (Paddlepop @ 20/12/2012, 05:18 PM) <{POST_SNAPBACK}>
My DH works in medical research for a major university in conjunction with a large public hospital. He obtains blood samples from different patients every fortnight. He has actually collected some blood samples today.

One of the most important parts of the blood collection is the consent form and explaining what the blood will be used for. The patient can withdraw consent at any time and any blood or other product that has created from that patient's blood will be destroyed. It is completely against the university's ethics to use it for any purpose other than what the patient has agreed to.


I have the same limits; my patients can give consent for their sample to be used for that project only, or unlimited use in other studies. They can also opt to be informed of anything I find, or not. Though I don't collect the samples myself, it is done through clinics.

I don't think I'd have much issue with cells being used from myself, as long as it is for the greater good. I've already had some of my medical "stuff" presented at conferences when I was younger.

#15 Rosiebird

Posted 20 December 2012 - 08:04 PM

QUOTE (Helena Handbasket @ 20/12/2012, 04:07 PM) <{POST_SNAPBACK}>
It would be amazing if a persons cells lead to a cancer cure or another medical breakthrough. Those are all positive things. The HeLa cells were used in testing nuclear weapons though, so obviously not all research done was 'positive' and for the benefit of human kind.

If I ever discovered my cells had been used to help develop something like that, then I'd be horrified and would really struggle with it.

Also, with mapping the human genome, if someone mapped your genes, they also have 50% of your children's genes. When this information can be used to determine a persons risk of certain diseases etc. is it ethical for that information to be logged and stored when the information could potentially be used against you or your children (I know it is not legal now) to deny them health insurance or certain jobs just because someone once signed a piece of paper saying they could use their tissue for research?


I think you're drawing a very long bow with your second paragraph. It's a little ridiculous.


#16 CherrySunday

Posted 20 December 2012 - 08:23 PM

QUOTE (Helena Handbasket @ 20/12/2012, 05:07 PM) <{POST_SNAPBACK}>
It would be amazing if a persons cells lead to a cancer cure or another medical breakthrough. Those are all positive things. The HeLa cells were used in testing nuclear weapons though, so obviously not all research done was 'positive' and for the benefit of human kind.

If I ever discovered my cells had been used to help develop something like that, then I'd be horrified and would really struggle with it.

Also, with mapping the human genome, if someone mapped your genes, they also have 50% of your children's genes. When this information can be used to determine a persons risk of certain diseases etc. is it ethical for that information to be logged and stored when the information could potentially be used against you or your children (I know it is not legal now) to deny them health insurance or certain jobs just because someone once signed a piece of paper saying they could use their tissue for research?

This is what would worry me - sounds a bit like something from a Sci-Fi (gattaca, anyone?), but it's a slippery slope if there's no legislation surrounding it.

#17 CherrySunday

Posted 20 December 2012 - 08:30 PM

QUOTE (rosiebird @ 20/12/2012, 09:04 PM) <{POST_SNAPBACK}>
I think you're drawing a very long bow with your second paragraph. It's a little ridiculous.

Not really, it's become enough of a potential issue for the US to introduce a Genetic Information Nondiscrimination Act (2008)
http://www.genome.gov/10002077

In Australia, you can't be denied health insurance because of genetic informatio n or family history, but it can "affect a person’s application for life insurance products, such as cover for death and income protection". (from here)
Insurers are only bound by the Disability Discrimination Act, but I imagien they are looking at ways to make people pay more on their premiums based on genetic information.
The link above talks about it briefly, but basically says Australia has no protection from 'misuse' of genetic information beyond the Disability Discrimination Act.

#18 Helena Handbasket

Posted 20 December 2012 - 08:40 PM

QUOTE (rosiebird @ 20/12/2012, 09:04 PM) <{POST_SNAPBACK}>
I think you're drawing a very long bow with your second paragraph. It's a little ridiculous.



Can you explain why?

There are genes linked to certain diseases, yes? (the breast cancer one comes to mind). And those genes can be inherited, yes?  

That information could be very valuable to a health insurer as a person with a greater chance of developing a disease, like breast cancer, could be denied health insurance or charged much higher premiums.

I know that it is not legal for health insurers to obtain an use information like that currently obtain and use this kind of information. But should a loophole be found or in the future it becomes legal, I certainly wouldn't put it past them to do it.

Some mental illnesses also appear to have a genetic component and can be inherited. If a persons parents suffered bipolar or schizophrenia, and they wanted to join the police force (just an example) and it came down to them and another applicant, if that persons parents genome was available to the police force or any other employer (once again, I know it isn't currently legal) could it not be used against a person?




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

 

Win a Mountain Buggy Swift

To celebrate Essential Baby reaching half a million Facebook fans, we have a Mountain Buggy Swift to giveaway to a lucky fan.

Shopping with kids: breaking the pester-power cycle

You're out shopping with your little one and they're incessantly whining that they want a treat. It's easy to say no ... the first time, at least.

eBay jacket may hold clue to murdered girl's identity

A jacket similar to the one found with the remains of a brutally murdered little girl in South Australia has been identified on eBay.

New mum forced back to work early due to paid parental leave 'technicality'

Shelley Parker had to keep driving buses until the date her baby was due and will have to rush back to work at the end of this week after being denied paid parental leave on a "technicality".

Pregnant Amanda Palmer poses naked for book drive

It has to be the most original way ever of promoting a children's book donation day.

The conception dilemma facing many parents today

Some parents who conceived through a sperm donor will be wary of telling the child, while others prefer to deal with it early on. But recent research suggests it makes little difference either way.

The wedding photo the bridesmaid would rather forget

We've probably all seen a passed-out bridesmaid at one wedding or another, but it usually happens towards the end of the night.

Pregnant TV meteorologist takes on haters

Pregnant TV meteorologist Katie Fehlinger has hit back at haters who called her a "sausage in casing".

Honest words from first-time mums

I didn't want to say anything negative to my pregnant friend, but I wish I'd been more honest.

Adorable baby experiences rain for the first time, couldn't be happier

Harper had seen rain from the comfort of indoors before, but had never had the pleasure of being outside and experiencing it first hand.

What it's really like to start a family in your fifties

Many people suppose that it must be much more tiring to have a baby in middle age, but all the mothers in the playground look exhausted, whatever their age.

'Biggest hypocrite ever': Josh Duggar admits to Ashley Madison account

An American reality TV star has been busted with a cheating website account, according to US media.

Long recovery ahead for girl hit by car weeks after baby brother's death

A little girl is more alert and starting to talk after being hit by a car a week ago, but still faces a long recovery.

How to react when a toddler lies

Q: My almost-3-year-old is starting to figure out that he can lie when asked if he ripped the book, threw the food, hit his brother, etc. Totally normal, I know. How do we respond?

The circular experience of a Centrelink client

A mum-to-be experiences the frustration of dealing with Centrelink, myGov and everything in between.

Kelly Clarkson announces live on stage: 'I'm pregnant!'

Singer Kelly Clarkson has announced she is pregnant with her second child during a concert in Los Angeles.

Hack

How to search the leaked Ashley Madison data

At least three sites are republishing Ashley Madison's user data on the public-facing internet.

Mum dances her way through labour

There are a fair few ways to distract yourself and beat pains while in labour, but it's probably a rare woman who chooses her dance her way through it.

'Rest in peace, my little lion': premmie baby Jacob passes away

Baby Jacob, whose photo of him born at just 27 weeks was deemed 'too graphic' for a fundraising site, has died.

Mum killed three young sons 'to help her daughter', prosecutor says

Niall Pilkington's death last summer apparently raised little alarm in Bellefontaine, Ohio. Tragic accidents happen, after all.

Shorter women have shorter pregnancies: study

When a group of researchers studied nearly 3500 mothers and their babies, they noticed a curious pattern.

Get your FREE Baby & Toddler Show ticket!

Get your free ticket to the Sydney Essential Baby & Toddler Show for September 25-27 - register online now.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

The worst 20 minutes of my life

Thirty seconds was all it took to turn a shopping trip into my worst nightmare.

Top baby names for England and Wales in 2014

George has overtaken William in the official rankings of most popular British baby names - and Game of Thrones is still having an impact on parents.

Baseball or baby? Dad's tough choice

What's more important, a baby or a baseball? That's a question this dad seems to struggle with.

Childbirth choices: five star or free?

It's not often you hear the words labour and luxury in the same sentence but for some, a 5-star start to parenthood is exactly what they seek. And with a number of private hospitals now offering packages which include a post-birth stay at a sumptuous first class resort, many mums are choosing to recover in style.

'Where did your boobies go, Mummy?' and other soul-destroying comments from kids

Most women carry a smidge of baby weight after giving birth. If you're lucky enough to have an older child in the house, they can keep you on track with your weight loss goals.

Do you read me, baby?

Is it too soon to be reading to my two-month-old son? If not, what should I read?

Minimising sibling rivalry when you've got a baby

Sibling rivalry is an act of competition, but if your children feel involved and special, this type of jealousy will be minimised.

Will studying on maternity leave take you away from your most important job?

I remember when I was trying to decide if I could combine motherhood and furthering my university education.

Win a Pacapod this Father's Day

To celebrate dads and families, we are giving away a Picos Pack from Pacapod Australia filled with a few extra goodies ENTER NOW

Preschooler hit by car shortly after baby brother's death

A mother has had a frantic race to the hospital after her daughter was hit by a car, just four weeks after her infant son died.

Gay couple and Thai surrogate in custody tug-of-war

A six-month-old baby girl is trapped in the Thai capital in a bitter custody wrangle between her Thai surrogate mother and her biological father.

Couple denied IVF over parenting concerns

A mother of six has been denied access to IVF treatment in order to have another child over concerns about her parenting skills.

The book that promises to put your children to sleep

Exhausted parents from around the world are singing the praises of a "miracle" book which promises to put even the most restless child to sleep in just minutes.

5 things every parent who feels guilty needs to know

Parenthood can make you feel bad, but you're not alone.

Royals criticise 'dangerous' attempts to photograph Prince George

The British royal family criticized paparazzi on Friday for what it called their increasingly dangerous attempts to photograph young Prince George.

'No jab, no play' rule to cover Victorian kindergartens and childcare centres

"Anti-vaxxers" face not being able to send their children to childcare centres or kindergarten if they refuse to have them immunised.

15,000 birthing kits on their way to developing countries

Giving birth in a hospital surrounded by medical experts is tough enough, but some women deliver babies without a clean sheet to lie on.

Photo of premmie 'too graphic', fundraising site says

When their son Jacob was born at just 27 weeks, Christina and Jeff Hinks were thrown into an uncertain world.

The latest Bugaboo collections: cool chevron and runner prams

Bugaboo sure likes to keep things fresh, and with the Australian spring/summer season coming up, there are two new Bugaboo pram releases.

Making room for two in the bed

Mum's room or their own room? Cot or bassinets? Deciding where twins will sleep can be tricky.

 

FREE TICKET

See Hi-5 LIVE in Sydney!

Get your free ticket to The Essential Baby & Toddler Show and save $20 - register online now!

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.