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Old 05-09-2007, 09:50 AM   #1
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DNA and Down's

okay, i don't want this to be a typical abortion thread. let's stay away from "is it a person/you're a murderer" and procedures and morality and all that. let's keep it as focused as we can on the issue of birth defects -- is Down's a birth defect? is it comparable to, say, Tay Sachs or harlequin ichthyosis? -- and the choices people are faced with, and whether or not legality is the way to amend a problem, if you agree that there is a problem.

okay. deep breath.

[q]Prenatal Test Puts Down Syndrome in Hard Focus

By AMY HARMON
DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.

She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.

“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.”

Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.

Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.

About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.

Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call” network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.

The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.

“We want people who make this decision to know our kids,” said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. “We want them to talk to us.”

The focus on the unborn is new for most parent advocates, who have traditionally directed their energy toward support for the born. But after broader testing was recommended in January, the subject began to hijack agendas at local support group meetings.

A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain.

“The impact of these changes on the Down syndrome community is going to be huge,” said Dani Archer, a mother in Omaha who has set aside other Down syndrome volunteer work to strategize about how to reach prospective parents.

The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.

“There are many couples who do not want to have a baby with Down syndrome,” said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians’ group. “They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice.”[/q]
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Old 05-09-2007, 10:16 AM   #2
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Why would it not be a birth defect? I don't think something has to be fatal in order to be a birth defect. I know a guy who has his heart on the wrong side of his chest and one arm shorter than the other. He manages just fine, and we still call this a birth defect because it happened in utero.
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Old 05-09-2007, 12:29 PM   #3
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Of course it's a birth defect, as well as a genetic defect and disorder. As unfortunate as it is, I believe it's up to the individual person whether or not they would like to "amend the problem."
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Old 05-09-2007, 01:13 PM   #4
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I should have a lot to say about this given that I have twin Down's neices that I am in love with, and I am and always will be pro-choice, but I just don't know how to talk about it. Not today, anyway.
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Old 05-09-2007, 01:13 PM   #5
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do we then start to veer towards eugenics?

it seems morally responsible to abort (to my mind) on the basis of some birth defects -- say, harlequin icthyosis -- but is it irresponsible to abort on milder birth defects?

further on down the line, what if DNA allows us to know which babies are going to be smart or not? gay, or not? do we restrict abortion rights on the basis of some birth defects but not others? what might those be? how do we draw up ethical boundaries?
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Old 05-09-2007, 03:34 PM   #6
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So what if we do? I would have no objection to selecting in favour of beneficial traits for my offspring and maximising their potential and I think people should have as much respect for the new master race of augments as they do for others.
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Old 05-09-2007, 03:51 PM   #7
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Quote:
Originally posted by A_Wanderer
So what if we do? I would have no objection to selecting in favour of beneficial traits for my offspring and maximising their potential and I think people should have as much respect for the new master race of augments as they do for others.


does society benefit by the existence of Down's?

likewise, if, say, we were to find that elusive "gay gene," and if, say, a majority of parents decided to abort on it's existence, what would be the cultural consequences? who would design your denim?
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Old 05-09-2007, 04:41 PM   #8
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This is interesting. I nornallly don't do abortion threads. Abortiton threads on FYM are kusually a drag. I'm pro-choice. It's tough to accuse anyone of being ?pro-Downs Syndrome".
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Old 05-09-2007, 05:06 PM   #9
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Most people probably have plenty of traits that are a disadvantage in the modern world that if given the chance would want to elminiate. Elimination of the Mendelian diseases is underway right now and will only continue.

Of course when we get to altering traits in cognitive function it gets really messy since these attributes arise from a confluence of different factors; does turning a supposed genius switch on have negative concequences for other functions - look to cases of savantism for a very narrow window into the possibilities. Which comes first a proper theory of the mind or the ability to distort it? And could the second case yield the first.

But then again the mammalian brain can handle new traits, it has a degree of plasticity (see the great experiment where they gave mice colour vision receptors and the brains developed to match it); perhaps it may not be out of the question.

Of course all of this is moot for me as an individual since I was born before this hypothetical technology is in force; im game for cognition enhancing drugs and transhumanist electronic implants.
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Old 05-09-2007, 05:28 PM   #10
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Quote:
Originally posted by A_Wanderer
Most people probably have plenty of traits that are a disadvantage in the modern world that if given the chance would want to elminiate. Elimination of the Mendelian diseases is underway right now and will only continue.


but most people don't want to kill themselves in order to get rid of the trait. and if pressed, while most gay people acknowledge that it would be easier to be straight, i'm more than willing to bet that even a majority wouldn't choose to be straight if they could.

of course, being gay is hardly comparable to having Down's, let alone a ghastly disease like harlequin ichthyosis. what i'm trying to get at is whether or not the advancement of DNA testing throws a different light on one's decision whether or not to abort.

it could be argued that someone who would abort a Down's baby shouldn't give birth to a Down's baby, but somehow i think that while no one would choose a Down's baby, they are ultimately glad they have that child -- assuming, of course, the pregnancy was desired to begin with -- regardless of the Down's.

is this something we can legislate?
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Old 05-09-2007, 05:37 PM   #11
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But we aren't talking about killing people; it is selecting an embryo with the desired set of traits or engineering one that has them; taking out the odds that the kid will have some severe disadvantage, and if ever we reached a stage where the potential could be increased then that should be on the table too.

If we are pro-choice because a person isn't in the right situation for a kid or they don't want one then that includes because there is a strong chance that it will be gay (even though it doesn't seem to be strictly genetic).

It's an issue of reproductive freedom. The tough question would be is it right to select for a child with a severe disease (not happening in practically every case but there are things like deaf parent wanting deaf kids).
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Old 05-09-2007, 05:57 PM   #12
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I don't want to "engineer" my child, but if there was a severe birth defect to be found I sure would go into some deep thinking, together with my wife, whether we would want the child.

With Down's Syndrome, or Autism or such, quite possible.
Something more serious, rather to definately not.

But I really don't want to make up my mind, yet, and quite frankly, I can't.

For the rest it's my normal stance: The parents should decide. I would never judge them, doesn't matter how they decide.
It's not my business.
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Old 05-09-2007, 06:05 PM   #13
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I'm kind of a black and white person who understands that most things are gray, if that makes sense. The way I see it, you are either pro-life or pr0-choice. I don't think I could personally abort my baby for ANY reason, but I am still pro-choice because I'd rather take the risk of the "all" than the "nothing". For me, the big part of being pro-choice is recognizing that abortion is a choice that should only be made between the couple and their doctors. Therefore, I can't really say with any conviction that I think X-disease should be aborted but Y-disease should not. I'm pro-choice because I understand that for me there is no gray area, but I have no right to make that assumption on others. I'm pro-choice because I value the right that I can choose to be black and white. What other people decide is hardly any of my business.
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Old 05-09-2007, 09:18 PM   #14
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Quote:
Originally posted by A_Wanderer
So what if we do? I would have no objection to selecting in favour of beneficial traits for my offspring and maximising their potential and I think people should have as much respect for the new master race of augments as they do for others.
I understand the theoretical perspective behind your views, but I wonder if you understand the practicality and reality behind your own views? I think what you are talking about is possibly nothing but a waste of time and money. Selection of traits which are beneficial in terms of intelligence and so forth cannot make a bettern child or race. Let's narrow this down to intelligence alone. We all know intelligence doesn't really lead to as much as we're made to believe. Smart people can end up unemployed, or end up lazy and therefore unwilling to utilise their advantage, they can end up incredibly stupid and lacking forward thinking on other areas, they can end up working in a sandwich shop. They can be absolute arseholes, killers, violent, drug addicts, sex offenders, hairdressers, artists, teachers, orthopaedic surgeons, truck drivers, anything. What are your visions for a child of higher intelligence? Your visions of greatness have a small window of likelihood of eventuating, you do realise this, don't you? You do also realise that as a parent, you know full well once they are born that what they are born with really doesn't matter.

I'd suggest you direct your energies to AI and creating a robot. You've got a much better chance of moulding/programming it into what you envision than you do a human being.
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Old 05-09-2007, 09:54 PM   #15
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Am I the only one who interrogate my mother "Why didn't you abort me?"

I think parents are the most selfish people. The child was born, only because the parents want the fun of sex, or because THEY want a baby. Did they ever ask the baby, do you want to come with us, to live in this world? Even if your parents are poor, and you will not be as clever as other kid, not good looking, short, got betrayed by your friends all the time, sick all the time because your body is weak; will be poor for all of your life; you will fall in love but no one love you back....(do I need go on?)

Do we even have a chance to say no?

Yes, the paretns would say: Well, you know we love you no matter what you are.

Hello? Are you going to take care of me for the rest of my life? Can you give me whatever I want? Please don't make promises that you can't deliver.

Abortion? Yes. If you can't be the BEST parent in the world, please do not have children. If you really want a baby, adopt homeless kid, please.
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Old 05-09-2007, 10:30 PM   #16
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I can't believe you don't thank that lucky sperm which beat 180 million - odd others to create you!! And that was just that one time in which you were actually created! So many sperm. One baby. Those odds, huh. And you're ungrateful.

I'm certainly going to ask every sperm from now on if it wishes to fertilise my egg or not.
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Old 05-09-2007, 10:43 PM   #17
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i heard it said that if the average ejacuate were -- in theory -- of the volume it would take to fill an Olympic (50m) pool, then each sperm would be the size of a goldfish.

amazing.

i still want to know if we'd abort if we'd be giving birth to a deaf baby. or a blind baby. if we could test for such things.

essay question: what does ability difference -- hearing abled, or not; sight abled, or not -- bring to our lives? do we learn from those who are differently-abled? is it condescending to view those who are deaf/blind/whatever as teaching tools for the rest of us? would most of them change their abilities if given the chance?

on a side note, i know i bring up the gay thing, but i think the deaf thing is very interesting. the US's premiere deaf university -- Galludette -- is in DC, and from what i understand, deaf people see themselves as quite politicized and have as strong a sense of pride in their own community as any other minority group -- in the same way that many gays would never want to be straight, many deaf people would never want to be hearing.

just saying. i think it's all interesting, and it leads me into some self-absorption, in that my life is certainly enriched when i meet differently-abled people from all walks of life, but then i wonder if i'm being a jerk and condescending if i see each little encounter as my own litte sitcom-esque "very special episode of Blossom" where i learn a tidy life lesson in 22 minutes about people who are different from the rest of "us."

and then i realize that i perform that function for myriad other people. and while responsiblity/burdens can suck, it's really not all that terrible.
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Old 05-10-2007, 05:06 AM   #18
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May be they do, may be they don't. But no matter what, could they do anything about the fact that they are different?

could sleeping with a woman make a gay straight? Or could the loudest rock concert make one deaf people regain the hearing?

I watched a TV interview of one pop singer when I was younger. He was pretty popular around that time in the local area, but he couldn't walk. On the interview, he told the reporter stop telling him how strong and brave she think he is, and told her that he is not, and he probably cried more than anyone else in the world, at night. He only made the choice refuse to have a sad life, because he don't have a second choice.

I guess the answer for this thread's question is whether we should play the safe bet or take the move that risk more than one people's happiness and lives. Making this kind of decision is like gambling, no right or wrong answers, only winner and loser.

=======================

To Angela Harlem:

I know the odd are so low, almost like wining the top prize lottery, and there always people criticize me for not being grateful. Let me tell you a story, because it's easier to explain this way.

In 2002, I was a third year uni student, and our uni build a new 20 floors library tower. A girl and her boyfriend is spending the lunch time at the roof of the building, and she was playing with the boy. Suddently the boy dropped his mobile phone out of the building. It was only few people in the campus, but there was another boy just walked out of the library. the phone hit his head almost killed him.

I think the chance for someone got hit by a mobile phone droped from 20th floor is almost equal to the chance of winning the top prize lottery, too. I doubt the one got hit by the phone felt grateful.
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Old 05-10-2007, 05:25 AM   #19
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Down's is a very variable condition from extremely mild cases to extremes, some can even enter mainstream education with some specialist help.

Problem is the testing can not tell the degree of mental retardation or other health effects that the child will suffer.

Down's could be screened for before fertilisation though,most of the time it is caused by an extra chromosome in the egg, rarely in the sperm...so you could detect it before abortion even becomes a consideration, as there is no possible life yet.

I would be against messing around with our gene pool as A_Wanderer suggests. A lot of genes do not operate independently, intelligence is believed to be controlled by multiple genes, the tweaking required to produce a super intelligent baby, may have many undesirable results...certain genetic abnormalities may also have desirable effects, one of the most well known ones would be sickle cell anaemia. Those with the full blown condition die quite young, those who are carriers are slightly anaemic, but they don't get malaria.

Again I would be wary of the people who actually control the technology to do so anyway, it is likely only the rich would initially be able to afford it.
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Old 05-10-2007, 06:08 AM   #20
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As a starting point, I agree with Lies; ultimately being pro-choice, even if you advocate some particular time-window limit, inevitably means respecting the moral autonomy and integrity of individuals to make their own personal decisions about abortion, and you run the risk of making that respect pretty hollow if you get into trying to force broad social consensus (with accompanying implicit threats of public shaming and exile into furtive silence) as to the moral acceptability of what are otherwise legally permissible abortions for reasons X, Y and Z. As with anything else concerning this issue, there does of course need to be some room for qualifications--for example, both India and China have made it illegal for doctors to reveal sex during prenatal screening, not for 'feminist' or 'humanitarian' reasons but because they were seeing clear signs of demographically untenable sex-ratio trends in several regions. I feel differently about extending the flexibility for those kinds of imposed restrictions to vaguer questions of what makes for an acceptable quality of life (for both parents and child), though.

As far as the rest--well, Irvine used himself (as a gay person) as an example, so I'll use myself as a rather different sort of example. Without getting into details, I have an inheritable genetic defect that entails surgical and/or radiation treatments maybe once every year or so, occasional bouts of disabling pain, and random progessive neurological consequences, the worst of which is, usually, severe hearing loss to the point of requiring lipreading skills by late middle age. Does society in a general sense benefit from having people with my condition around, no, obviously not--it uses up disproportional medical resources per capita, causes occasional but inconvenient workplace disruptions, inflicts stress on families etc., while in and of itself offering nothing socially useful or "redeeming" that I can think of. On the other hand, it hasn't stopped me from having a satisfying career, a family, friends, hiking and running and all the other things I like to do in my spare time, and it doesn't usually cause symptoms until sometime in one's 20s, so it doesn't inherently place added burdens on parents. The three kids I have now were all born before the diagnosis was made, so it wasn't something we even thought about with them; we do, though, sometimes think about it with regard to any future children we may or may not decide at some point we'd like to have. Genetic screening isn't an option at present, as the gene involved is known, but how to predict what sorts of mutations in it will cause problems (many of them don't) isn't...yet. So, basically it comes down to 'risk factor' and most days my tendency is to think, well, in the grand scheme of all the possible things that could go wrong, this just isn't one to be all that afraid of; the consequences really aren't that disruptive, the treatment approaches are getting better all the time even if they can't cure it, and while of course it would feel better to know my child wouldn't ever have to deal with this, nothing in my own experience leads me to see this as an insurmountable obstacle to leading a productive and rewarding life, either for the afflicted or for all the people they'll have strong influence on in the course of their lives. "Life lesson in 22 minutes"--well, I guess I can serve that role to a point on account of my hearing loss, but on the other hand, on balance I really don't see any reason for anyone to ever feel sorry for me or my family. I can give as well as I can take, what I have to give comes from a mix of acquired and inborn skills that no one has to wait on me hand and foot to access, and I certainly don't need or expect to ever require someone hovering protectively over me at every moment on account of this.

But, this is obviously way less pervasive of a handicap than many others. I guess personally, my tendency is to evaluate those in terms of how they'd likely effect, first, the future social and physical viability of the child and second, the stability of the relationship between their parents and (if applicable) other relatives--existing siblings most of all. I do tend to see profoundly socially disabling conditions as being more serious than most physically disabling ones--for me, having normally functioning legs, eyes, ears etc. isn't essential to what makes a human life productive and worthwhile (though I'd grant that deafness is somewhat different here, in that it can be profoundly socially isolating, depending on what 'treatment' is given); whereas being able to work together with, gain and give support from and to others--those things I do see as innately tragic to be without. But obviously that's a very vague criterion--who gets to define and delimit what those capacities look like? I don't have final answers on that, nor would I want to impose them on anyone else. I feel similarly on the question of how much and in what ways a disability is likely to affect parents and siblings--having children ALWAYS brings with it huge risks, huge unknowables, huge potential consequences if the unforeseen happens, and I think it's irresponsible not to contemplate that (whether as preparation for having an apparently healthy child, or as reality check for contemplating having a disabled one)...but, it's likewise irresponsible not to think about whether your relationship and/or family in its present state is realistically up to the demands and strains you know in advance will likely result. To that extent I do think it's a great thing that parents of/children with Down's Syndrome are speaking out about what their experiences have been, to help demystify what it's like and lift it out of reflexive-associations-with-tragedy territory.

And as far as the possibility of one's child being "genetically fated" to be gay, well, in my opinion you've got a seriously messed-up sense of what makes for a productive and fulfilling life if you see that as a fundamental obstacle. Lots of racial and ethnic minorities would rather be from the majority "if I'd had the choice", lots of women would rather have been men "if I'd had the choice", there are occasional but nagging social heartaches that can come along with all kinds of things, but no one's genes are to blame for that; there's nothing inherent in those qualities to keep you from actively contributing to your community, your family, your work of choice, nor from finding it rewarding to be alive and able to participate and contribute. A sense of self-worth, and seeing that same possibility in others, shouldn't hinge on idealized 'normatives' like that; being able to contribute and participate productively may require certain fundamentals, and we could argue endlessly about all the gray areas surrounding that, but unless you want to get into playing rhetorical politics with false dichotomies and overwrought reductiones ad absurdum, I think equating what are really pretty garden-variety occasions for wistful wouldn't-it-be-nice thinking with profound disabilities is defeatist and deluded.

As an aside, I think most of us can feel pretty grateful to live in the sort of environment where modern medicine, advanced diversification of labor, high standards of living, and so on have made so many disabilites so much less tragically consequential than they might be elsewhere...I know I am.
Quote:
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If you can't be the BEST parent in the world, please do not have children. If you really want a baby, adopt homeless kid, please.
Why would someone who'd make an incompetent biological parent be any better as an adoptive one?

And there is no such beast as "the best parent in the world". I don't know anything about your family or personal background and don't want to make assumptions, but what you're describing sounds more like defeatist self-loathing than bad parenting. What a person has to offer the world isn't contingent on who their parents were or what happened with them, and it's having that opportunity to give to others and receive from them in return that makes being around worthwhile--not how attractive or rich or socially accomplished you are. That doesn't have to include one's parents; for some cutting themselves off from them may ultimately be necessary, but that's no reason to give up and feel chronically embittered about the whole endeavor.
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